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Hello My name is Barbara, my son Aaron born on 10/20/1987 with ABS on right hand with web finger( missing two finger) and ABS on both legs, he had cast on both legs at three months old, first SX at six month old, in school he was bull. We would like to join a study for ABS kids and are now Adult. Cuz I as his mother is hurting that I did something wrong to his life. I also wear the pain every day, wish that I could give him my body parts that he is missing to make his life better
I am a 74 year old man born with no fingers on my left hand. Mother told me this “deformity” was caused by the umbilical cord wrapped around my hand. It wasn’t until a few years ago I stumbled on an article about this syndrome. Bands in the uterus can become attached to appendages resulting in impeding growth.
It is not heredity. I have 3 children and 6 grandchildren all of which don’t have this condition.
Hi my granddaughter is 11 years old she is my daughter, child. She is my heartbeat. She is so beautiful. She is beginning to be tease about her left hand, from people she thought was her friends. I feel for her pain. I wish there was a support group or camp or programs we can attend. I know people are cruel but I wish she can meet other with a similar situation she has. Sincerely A loving supportive Grandmother.
Left hand missing part of left last three digits from first knuckle up. My mother told me Dr in 1964 I was born this way and my hand must have been up against her ribs when forming. My pinky is straight bone and short to first knuckle as is ring and middle finger but those two have a tiny nail my pointer finger is shorter some and nail is tiny. Thumb looks even. Hand is smaller then right.
Hi my name is Greta, I am 57 yrs old. I just found out about ABS And that I may have been a victim of it as well. My right hand, right foot and left foot as well. My family tell me I wasn’t supposed to walk. My mother had passed before I found this out and my father doesn’t know, I think he was just glad it wasn’t his fault. Since it falls on the mother. And is not hereditary, that I was glad to hear since I have 2 boys.
Hello, my son was born with ABS at 11 in December of 2019 in Russia. His name is Leo.He doesnt have one finger on a left hand and half of another finger on the same hand. In Russia there no comunities of parents with the same problems. We have visited about 10 doctors and decided to make surgery this year or the beggining of the next year. Its fearfully for me and my wife how anasthesia can affect on health of our son. But doctos said that its needed.
Hi there, Jikke from the Netherlands. 41 and born with Amniotic band syndrome. My right hand only has a normal thumb and all other fingers missing half. My left hand is nornal. I miss half of my big toe on my left foot and the toe next to it. At the right foot I only miss half of my second toe. Would like to hear from other people in NL. Working as a PA and mother of two teenagers. Growing up and other people make you realize you are different was hard sometimes.
Hello, my name is Peggy Flores and I was born with ABS. I am now 42 years old , and by the grace of God, still able to maneuver around with daily routine, but have to say it bothers me at times. The stiffness of the toe areas, I want to move them,but due to the band it’s aggravating. One thing for sure, I never let this slow me down. Yes, at times the pain is real, I am desiring to find ways to exercise my foot some to find some kind of relief of the stiffness, if anyone could help or know anything I can do please fill me in.
I came across this children’s book that I think would be great for young kids to read to help them and their classmates deal with being different. A few parents of kids with ABS recommended it to me so I’m just passing it on. Hopefully, you can add it to your book recommendations page! 🙂
https://amzn.to/2YnkPL4
Check out the inspiring book “Inseparable: How Family and Sacrifice Forged a Path to the NFL” by
Shaquem Griffin and Shaquill Griffin, HarperCollins Christian Pub.
https://amzn.to/2V3ERby
Much more than a sports memoir, in Inseparable Shaquem and Shaquill Griffin share the previously untold details of the powerful and inspiring story behind the modern NFL’s first one-handed player, and his twin brother’s unrelenting devotion, sacrifice, and love. It’s the story of Shaquem’s understanding of God’s purpose for his life—to inspire others to stop being afraid and to stop making excuses—and his family’s unwavering support in spite of seemingly insurmountable obstacles. The Griffins’ unlikely underdog story has already captured the imagination of millions of football fans and physically challenged people around the world.
My granddaughter is due in May. We found out on December 4 that there were complications and were sent to a teaching hospital about an hour away. The Dr. explained that amniotic band had formed around her face and brain and there is no chance of survival outside of the womb. They suggested termination may be better. My daughter chose to continue the pregnancy. Our second visit last week was horrible they wouldn’t let my daughter see her babies face on ultrasound, we had to ask. The doctor said inducing labor 3 weeks early would be in the best interest of my daughter because the baby will be smaller. They are basically waiting for my daughter to miscarry. I feel like more should be done but when I suggest it I’m told nothing can be done. Any help or info please.
So sorry Amy to hear your story. Unfortunately, it doesn’t sound like there is anything that can be done at this stage.
If you are on Facebook please join our support group https://www.facebook.com/groups/amnioticbanssyndromeabs/
There are a few members who had this devastating diagnosis and they will be able to support you, your daughter and other family members. I am and admin for the group
i would also like to add that there is at least one member whose child, given a similar prognosis, is thriving, although there has been a lot of surgeries along the way. There is always hope, however faint it is
I found out I had a single amniotic band at 10 weeks. They ruled it as a synechia so I didn’t think anything of it. I did a fetal medicine scan again at 14 weeks, but I don’t think the sonographer was qualified for abs… I think there was bands and she missed them… I also had an in depth scan at 20 weeks they also said there is no bands (the one disappeared) and she saw no damage. Next scan was 28 weeks I found a new Dr. And clinic… she did some 3d pictures on his hands… the fingers look very deformed but they keep saying he has no damage and there are no bands! I had another scan at 34 weeks and 36 the fingers look affected still also I haven’t seen both feet since my 28 week scan and I haven’t seen the toes at all and they aren’t concerned… I’m 38 weeks this week and I’m terrified to give birth. I don’t know what to expect.
That’s true, this is not under stood and it is caused by only certain females not all. And my mother was one as well, and they don’t know where the rings will land. Mine were on my feet and right hand. I am so sorry about your family.
I’m 34 and I have ABS at my index, middle and long finger on my left hand. I have three fingers left on my right hand and a jumble of toe-like tentacles on my right foot. I like my dinosaur paws. I’ve never been picked on at school. Despire my fears of being shunned by the pretty girls, I had some great girlfriends and ended up with a wonderful wife. I’m a marketeer and translator, so I use my dinosaur paws every day to write meaningful sentences and beautiful words.
In a few days, my first-born daughter will see the light of day. Ten fingers, ten toes. I couldn’t be more proud (Though eight would be just as great).
Thanks for your great site! It’s good to have a place that feels like my private home.
Hi Yannick.
God bless you for writing this awesome post.
Our son was born with ABS on Christmas Eve. I must admit we were a bit saddened at first, wondering what we could have done differently; worried that he would have a harder life.
Having spent some time with him these past few days have flushed our worries away. We know he’s going to be an amazing dude, and we’ll do our best to give him all the love and guidance to help them get there.
Your post made us smile; it made us feel we’re in the right. His ABS was just the last brush stroke on the beautiful painting that life/god created that is our son.
So dreadfully sorry to hear such devastating news. You and your dear family must be so anxious on every count. Nothing I could possibly say will make the coming weeks any easier to bare, I will be thinking of you all and your darling little one.
Caralyn. (ABS afflicted)
Hello I am Greta Atkinson, knew here. I am 56yrs old and just finding out that my birth defects are all streeter bands. Left ft, right ft, and right hand. Rt foot also clubbed. Yes 56yrs. Wow. Never looked it up Knew clubbed, webbed and deformed, also hereditary. Long story to my life. Still walking , amadestrus, spelling bad. Write with both hands. . I am not down .
Bands were discovered showing a missing forearm at 3 months. Is there any danger that there may be other bands free floating that would cause additional damage? In Utero Surgery has been performed to free limbs from amniotic bands that threaten to amputate limbs. Results of the first surgeries of this type were published in the “Journal of Ultrasound in Obstetrics & Gynecology.” It is the first minimally invasive treatment to correct a non-lethal fetal condition. Does anyone have experience with this surgery? My wish is that a surgeon identify any free floating bands that could cause future damage and have them destroyed by a laser or other means.
Although my child has challenges with a different disorder (ADHD & Anxiety) that’s not physically visual, I am a parent who understands the pain of seeing your child in emotional pain. I have a friend who’s daughter has abs with her hand and she shares stories of her daughter’s feelings that just break my heart. To help, I’m looking for other parents with children located in MD for starting and/or finding a support group/activities. I’ve searched online for hours and can’t find anything.
I suggest looking on Facebook or Meetup
Hello I am Greta Atkinson, knew here. I am 56yrs old and just finding out that my birth defects are all streeter bands. Left ft, right ft, and right hand. Rt foot also clubbed. Yes 56yrs. Wow. Never looked it up Knew clubbed, webbed and deformed, also hereditary. Long story to my life. Still walking , amadestrus, spelling bad. Write with both hands. . I am not down .
I have ABS on both hands and right foot.
I knit and crochet.
Right hand thumb and pinky is normal
Left Hand pinky is normal.
But still my hobby is knitting and crocheting.
Almost identical to mine although the inverse. You go!!
My son was born with ABS, his right big toe and pinky toe are normal, the middle three are affected. He’s never had a problem doing anything because of it. Unfortunately it makes him ineligible to join any branch of military.
Hello!
My husband and I could not have children for 5 years. And when I was 40 years old, we decided on surrogacy. Since donor egg cells were used for this, this did not guarantee us the absence of any genetic abnormalities in our child. And so it happened – our son has ABS, but I am still grateful to God for having a son!
Nora, ABS is not genetic. The fact that your son was born with ABS has nothing to do with the donor egg.
My mother was born in 1929 with a right hand affect by ABS. Her mother decided it would not be a problem and she could still wear a wedding ring. She grew up to be the best and never give up! She had 8 children and diapered every one with cloth diapers! As one of those 8, we thought it was normal and were never bothered. She will turn 90 this year and I consider her a hero!
Your mother is a real hero!
My son was born with ABS with shortened thumb with fourr fingers all missing and fused together on this right hand and right feet with all the toes fused together. He was born prematurely at 34 weeks….i can’t help to stop thinking it was my fault, only if I have been careful and stay home more, any of this might not happened. How to get over the guilt inside me? You are so brave to decided to have another child right after, i have always wanted to give him a sibling, but the idea of this condition scares me.
Karen,
ABS occurs randomly. It is not genetic, it is extremely unlikely that ABS will affect a future pregnancy. The causes of ABS is not known, but there’s no indication that it is caused by anything a pregnant Mom did or didn’t do during pregnancy. This is not your fault, so don’t feel guilty. Give yourself permission to have another child.
Don’t blame yourself I was first born in my family and I was born with my hands and feet messed up and my mother had 4 more children and they are all just fine. I only found this website about 3 years ago before that I never new why I was born this way. I’m 58 I can do anything everyone else anyone can do. So please don’t beat yourself up.
My little girl was born with ABS and her hips messed up to. Been thru one surgery so far, gotta go back for checkup, but she seems like she’s in constant pain all the time….
My son has had 6 surgeries so far and has more to go because of ABS and he is in pain as well. For example, he had surgery on his leg so that he can wear a prosthetic leg but he has so much pain when something touches the bottom of that leg and we are forever going to the doctors trying find a solution other than a scooter or something of that nature. It hurts watching him struggle with pain so I understand how you must feel with everything. I am trying to reach out to other parents dealing with this same thing so that I can get different sides and better understandings of this because he was missed diagnosed and my doctor at the time would not even acknowledge the fact of the mistake.She didn’t even talk to me after the delivery she just sign off on my paper work and left the hospital so my struggle is extremely real since 2015.
The experience I had with ABS with my first born was not the best experience and I know you can’t prepare for everything but from my second opinions I received I could of had more help. My son was born with missing fingers on his left hand, cleft lip and palate, missing his left foot and ankle, and three of his toes were conjoined on his right foot. He has and still is undergoing surgeries help correct this issue but it has a few side effects behind this process but I’m here for him every step of the way. I just wish the doctor I had did her part properly so when I am asked about the process and how did I prepare for this by other doctors so that they can help me out more throughout this process I cannot give them a good answer. I hope that everyone who reads gets to see the different things that happens during pregnancies and go above and beyond prepare themselves for anything.
I was born with abs I lost my right hand and I can write mirror image because I was meant to be right handed and wherever I go people stare at me but why don’t they just ask it’s not hard. I wish where I live there was like clubs or like gang out sessions for people who have abs or things like that and they could talk about what there life is like and it’s for everyone .
Feel the same. Same situation, right hand and born right handed. I’ve never met or talked to anyone with ABS. Nice to know there are other people out there!
My son was born with ABS and I am trying to find others out there so I can connect with them and possibly make little friends for him as well. at 4 he’s already feeling different and acknowledging he’s different but I want him to know he’s not alone but were I live i haven’t met anybody like him many have other far worst birth defects. Nice to meet you all.Rita and Keeley
In 1995 my first grandchild was born. His mother could not deliver so an emergency C-section was done. He was bound to the womb by bands around his fingers and toes. It was so rare that it took the nurses a couple of days looking through medical books to find an article that they shared. One page in one book. We were lucky. He has one long finger on each hand and the bands did not damage his thumbs too much. He also has one foot that turns a bit. He has played all sports and the trumpet, types and has done wonderfully. He has suffered some emotionally but when he grew up he made many friends. We saw ultrasound images prior to an amniocentesis showing him with no bands and could see his fingers waving at us.
Our daughter Anna has/had ABS at birth. She is adopted from Russia, so unfortunately they didn’t do such a great job on her club foot surgeries. She also had to have many surgeries in the US to correct her fingers. She has 5 little ones and 5 normal fingers between her two hands. One leg is a bit shorter than the other. I remember reading something about getting/having hip dysplasia (sp?)with this syndrome. She is 14 (adopted at 2) and is having bad hip pains. We are missionaries in a foreign country, so we are not able to go to a normal Ortho doctor. Has anyone ever heard of someone having hip problems? Thanks so much.
I was born with ABS, had seven surgeries some quite painful, received a full D1football scholarship, was captain of my college team, had several interceptions, broke my high school javelin record, golf regularly now at 65. Until the player at UCF brought it to the public eye this past fall I never knew it’s name. It was not always easy but never ever give up. Silence the doubters. The alternative is unacceptable. If I can inspire someone else, great. Ed
I was born with ABS in 1943. Nothing was known about the condition, what caused it nor did it have a name. I learned the cause (ABS) just two years ago. My left hand has a normal thumb but the other four fingers were constricted together. My father never let me believe I was anything but normal. I remember in the 8th grade my typing teacher offered to teach me a one handed technique. Dad said “you will learn to type like everyone else or you won’t type.” I can now type 110 words per minute and built a career typing. Thankfully because my dad, I have never felt handicaped, different or embarassed. Children ask me about my hand and I am happy to tell them about it. I embrace my uniqueness.
I was also born in 1943. Have thumb and 2 fingers on Rt hand and 4 toes on rt foot. Rt leg is 2,5” shorter. My folks had me picking up rocks, ringing pigs, hammering and same stuff other kids were doing. I was pretty good in typing too. Retired now and fly a Cessna monthly.
Dear Trina
I too was born with ABS in 1945. Like you say, nothing was known about this condition and it’s only in the last 5 years that a doctor recognised the condition and research led me to know what happened. All her life, my dear Mother blamed herself and now I am 73, I wish so much that she could have realised that it wasn’t her fault. Mercifully, only my hands were affected and like you, I was always encouraged to do anything I wanted. I have a perfect daughter, and 2 perfect grandchildren. It’s such a relief to find this site. Thank you for your comment. Caralyn Walker
My mother was born in the 1920’s with only part of her right arm. She was somewhat sheltered growing up and her parents never had more children, most likely because they feared the anomaly was genetic, but no one really knew what caused this back then. She went on to have 4 healthy, happy kids, and lived her life fully, becoming an artist in college. I never really noticed growing up that she was “different” in any way – she was just a great mother, with a wonderful sense of humor. I agree with the comments I read on this site- just give your child love and encouragement. They are perfect in their own way and will be able to live a very full, happy life.
My daughter, Lilian was born with ABS. Both her hands and legs were affected. She has no left foot and her right she has a club foot. As a result of blood flow not reaching certain points, she is also blind.
I was born with it too, my primary level did not mind. but when i started high school i hide my fingers and its within me. i always make sure i carry something to hide them. i do nt knw why. i gave birth to beautiful kids with no Abs
I am Brooke and I was born with ABS. In elementary I really didn’t care what people said til I hit middle school. On the first day of school I wore a big jacket because I was scared but then this girl was in the bathroom when I was washing my hands she seen it and asked I said I was born that way, that’s what I always tell people but it is true. Now I have high self esteem because my mom told me that I was perfect she told me before I got on the bus “I wouldn’t care if you were a purple dinosaur you would still be my baby girl.”
I’m 16 this November and I was born with ABS it affected my ring finger on my right hand and my left foot from my ankle down. I had surgery at age 2 too remove my underdeveloped toes. I have always been told I’m normal and I believe too its just that sometimes I doubt it.
You are a living being, that is all there is to it. Easiest way to explain is imagine how giant planet earth is, and imagine all the ants ever, and a few ants are confused, some are lathargic some have a missing ant leg, whatever they move along and no one notices and the circle of life continues. It’s hard but if you can imagine “time” on earth, your time is so short, and not worth worrying about things like this.
Are there any ABS support groups specifically for teenagers?
My name is Haley, I’m 20 years old and expecting my first baby. I’m 30 weeks along, and when I was 12 weeks along my boyfriend & I were told our baby has amniotic band syndrome. Unfortunately our beautiful son has the band wrapped around the back of his head causing anencephaly. He’s 100% healthy outside of this defect. They currently claim they have no idea how developed the head is. I know that most likely my baby will pass sometime after birth. I had chose to go to term with him, but the days are getting closer. Looking for similar stories, and people who have been through this before.
Hi Haley, Thanks for commenting. I’m so sorry to hear this news. I can’t imagine what you’re going through. There is a section on the site for memorial stories—you can reach out to any of the story author’s. I’m sure they would be happy to offer you support.
Haley. Last year on 8/22/16 we lost our baby boy due to ABS. I found out at 13 weeks his frontal lobe was affected causing anencephaly and his left leg fully amputated and we were told he was incompatible with life. We were faced with many difficult challenges and decisions. We prepared for the worse and the loss. It was heartbreaking and labor difficult. The hospital provided us with a cradle to hold him and spend as much time as we needed. We had him blessed we spent several hours with him. The following days and months were so hard. It was a roller coaster of emotions. There are good days and bad days, emotions come in waves. I am coming up on his one year angelversary and as I approach this day the sadness and grief are overwhelming. Take each day in stride, enjoy and cherish the time you have.
Hi,
I sorry to hear this. Have you taken a MRI? that will tell you how much the head has been developed.
Thanks,
Karthik
A month ago, my daughter was born with ABS. It was a shock to me. But when I read the stories of others, she felt lucky because she affected the fingers of her four left hand except the thumb. Her fingers were crossed and attached to the tissue, and all her toes were cut except for the little finger. Help me where can I treat it and where is the best center for finger surgery in the world? Thank you for this site
Your note was written a two months ago, so by now you have found a doctor and a hospital. I have found that the best hospitals and doctors for “our” type of congenital abnormalities are the Shriner and Masonic facilities . Many large cities have such a hospital. The one nearest me is in Dallas, Texas and the name is Scottish Rite Hospital. One in Memphis, TN used to be called the Memphis Crippled Children’s Hospital. Fees : none, or it used to be that way.
Look on the Internet for Shriner Hospital locations.
I have ABS (no fingers on the left hand) and had 3 children, and now, 6 grand children. None of which as ABS. it is not genetic
I agree, not genetic. Maybe it was like a “cobweb” in the amniotic bag of fluid.
I have 4 children, 11 grand children, all ok.
I have a question: Do I have a greater posibility of delivering a newborn with amniotic band syndrome if I was born with amniotic band syndrome?
Hi Marilyn,
No you don’t. ABS is not genetic.
I must be on a roll today, making so many comments, but I agree with the above.
My mother only had one child because she feared for other children to have the same abnormality as I did. When I began to have children she was my biggest cheerleader to “take a chance.” That was many years ago and the medical profession’s knowledge has increased greatly, to say the least.
4 children and 11 grandchildren later, all were ok.
I hope you have a beautiful baby!
My name is Casey and my first child was born with amniotic band syndrome which affected both hands left hand she was left with small stumps for her fingers and a full thumb and on her right hand she has a thumb and a pointer finger and the other fingers are fused together (syndactyly) w didn’t find this until she was born as we were not able to see her hands properly in the ultrasounds. I was in a lot of shock but I am more then grateful we still had her as there is a lot worse unfortunately. She is going in for surgery soon I how just to separate her fingers on her right hand.. she gets along fine.
I am 74 now and was born with one half of the right index finger missing. Congenital Bands they called it back in 1942! I was also born with bilateral club feet. All of my life I have heard remarks about my “deformity” . Some people were very rude! My parents pushed me and never let me think anything was wrong. I became a registered nurse and worked 42 years! I married a man who never hesitated about loving me. We had four children and inronically my first born also had bilateral club feet, and then her first child had just one club foot. All fingers and toes were just fine. By the way, when I applied for nurse’s training all they asked me to do was to try on a pair of latex gloves. They wanted to see how I managed those, and all those years I just pulled the loose piece of glove down. Guess I passed inspection! But, again, my heart goes out to children who are constantly reminded they are not perfect, as if we don’t already know!
I was born with and also and I take offense to your statement that we aren’t perfect. We are all perfect in God’s eyes. Telling someone that they are not perfect will kill their self esteem and could be detrimental to their zest for life. Please don’t consider yourself not perfect
Hi, my names alissa and im am sixteen years old i was born with a amotioc band around my left leg. Growing up as a child i always felt ashamed of my leg and how it effected my daily life but coming into my teens i learn to love my body day by day .. Everyones is imperfect in some way so never put yourself down for your flaws they are a part of u
Hi Alissa, my daughter is 10yrs old. She was born with a band around her ankle. Has had 2 surgeries in which they removed the band, it nearly reached the bone. She is very lucky to have kept her ankle/foot. Her toes are affected but ok, leg smaller and shorter too. About 1.5cm leg difference in height so far. She is struggling with constant pain. Not sure if it is blood flow problems or something else. did you and/or do you experience this? she does have a compression stocking that the hospital have made to help with swelling. We are in Australia and do not have any other people we have found that have had same condition. thank you
Hello, where abouts in Australia? My daughter had her first baby 11 weeks ago, he has band around lower left leg, his left foot is clubbed and all of his toes not formed due to restriction of band. His right foot is also affected, no big toe and no toe nails on other toes. His left hand has pointer finger missing and ring finger and little finger fused together. He is a beautiful little boy and is loved dearly. We are in Hervey Bay Queensland.
Hi,
Are there any ABS support groups in Australia? We are melb based. My 9 year old daughter was born with ABS, club foot & other abnormalities assoc w ABS
Hello im 26 years old and about half way during my devlopment i kicked through my mothers amniotic sack. it ended up wrapping around my foot and removing all my toes, i was also born with a clubbed foot, and missing tendons and ligaments. also thr tendon just below my knee was so tight to the point my leg was blue at birth. long story short after recieving care at Scottish Rite hospital for children in dallas tx for 18 years im able to run normal and im pretty fast, most people dont notice my slight limp and assume im just walking like i think im tough.
Great job from a fellow ABS athlete (long time ago)!!!!! Never give up.
I am an occupational therapist. One of my elementary school students in Pre-K had 4 stubs for fingers on his right dominant hand. This emotionally affected him and he hid the hand and rarely used it. I began to do sports-type activities with him that required the use of both hands working together. I was pleased to observe that he readily used that right hand during play. I kept telling him that his right hand wanted a turn, too and strongly encouraged him to use it as much as possible. With support from teacher and mother, he quickly learned to use the hand instead of hiding it. This was one of the most rewarding experiences of my career
I am 23 years old and me and partner were more than excited when we found out that we would be expecting our first baby in June this year.
After our first scan we were told that unfortunately our baby wasn’t developing right. Baby had ABS and had already lost one of its lower limbs, right wrist was about to be detached, had cleft pallet and babies tummy had been punctured and was growing on the outside of its body.
My partner and I made the hardest decision to let baby go (I hate the word terminate). It was the worst decision I’ve ever had to make, but I knew if I would of had Baby and it would have been straight into surgery with not a high chance of survival.
We bought baby home and buried it with my partners parents- that put my mind to ease knowing baby was going with family who would love it and take care of it like we would of.
It was the first time I had ever heard of ABS and a lot of the time I question why it had to happen to us, why they had to take my baby. But I grow to understand more everyday- its just our baby got the bad end of the stick and I feel for anyone who has to make that decision- as much as I would have loved that baby no matter its looks or how many body parts, it was not fair. To live a life in and out of surgery with complications that last a lifetime is not a life at all.
My hat goes off to any parent who has made the same decision as me and those who made another.
We will be trying again in the future to extend our family with our little angel watching over us.
No. It’s rare and its like 1 and so many chances of it happening. My doctor told me not to be afraid of having another baby. And i believed him and my daughter is now 15months and is fine! God gives us angels for a reason! Its hard to lose a baby, but the blessing in having another one means everything! Goodluck to you both!
Please do try to have another baby I was the first born in my family. My hands and feet were messed up but I’m fine now. But my mother had four more kids and they all turn out just fine. I only just found out about how was born by this web site and I’m 56 and so happy that I found this place. If I hadn’t found this I still would never know why I was born this way. So go ahead and have a another baby that should be just find. I hope this makes you feel some what better. God just needed your other baby back with him.
I had to let my baby go at 14 weeks and 4 days 13 days ago due to severe ABS. I’d never heard of it before and the shock at the pure bad luck (as the doctor put it) was overwhelming. I miss my baby bean all the time and don’t feel like I will ever get over this. This was my first baby too and I just wanted everything to be ok. I can’t find the words for how I’m feeling right now and the prints of my baby’s feet are the only thing I have to cherish my precious little angel.
23 yrs ago our beautiful daughter was born with ABS. The ABS affected her hands. She has thumbs and one (1) normal finger on each hand. She had syndactly of her right hand; middle to pinky fingers. Her left hand; the middle three digits, each one is about one knuckle length. She also has a band mark around her right arm bicep, a visible indentation like if she had wore a tight bracelet and just removed it.
Her first surgery to release the middle finger was 13 months, it is one knuckle in length. The release of the pinky was at 18 months. Her pinky it is a lil nub. Her ring finger is one knuckle long, and has a itty- bit of a nail at the tip. I can remember each surgery like yesterday. She was a trooper!
Growing up there was nothing she could not do; she approached each task a different way. She conquered every challenge like the next child learning. She was a happy, very independent child.
We never felt sorry for her, or let her feel special or sorry for herself. Just kept it real and treated her like the other siblings.
Yes, she was bullied by some in middle school, (that’s a mean age) she was wise, and replied to their remarks with humor. They moved on. We worked through dark days, it’s not easy being born with a birth difference at that age. Don’t forget that’s on the cusp of the awkward teenage years; we all go through growing pains at that stage.
She is an amazing artist, piano player, and has outstanding typing skills, she grew up into an all around grounded, self sufficient adult with great friends. That typical millennial that wants to travel and see the world.
I wish I had resources, like this site, after the birth of my daughter. I was broken with guilt. I did everything right. I worked through it, and learned years later I had no reason to feel guilt. I had no control of ABS. Thank you for sharing & allowing me to share.
Renae, yours is a heartwarming story. Your daughter overcame the challenges, as we all did, and now she’s facing an adult life that is full of wonders to explore. I consider myself to be extremely lucky with the way my life has evolved. I wish the same to your daughter.
hello my partner is the same age as your daughter and was born the same way, may i ask are you from england?
I am 66 and just found this site today and now I know that I was born with ABS
Hello! My daughter was born with what they diagnosed as ectrodactyly on her left hand. Her pinky is not normal size as the one on the right hand but her tip is folded and has a nail. Her thumb is a little nub with no nail and missing her three middle digits — just nubs past the knuckles.
We were told that they could not grow fingers and they only thing to be done is to improve functionality of the thumb and straighten the pinky. Initially, the pediatrician suggested it was an amniotic band that stumped her development but the hand surgeon diagnosed it as Ectrodactyly. They suggested surgery to improve functionality of those two digits at age 3. She’s 17 months now.
What caught my attention from your post/story was the fact that your little one’s arm/bicep has a little indention just like my little one.
Sometimes, I feel guilty – why my little girl? Why did my body not protect her or why did my womb do this to her. Doctors told me that it could be genetic but my family nor her father’s family have any history or genetic issues. It just simply could have been an abnormality that happens due to our imperfection.
I’m very happy that your little one is a trooper and gives me the strength and hope for my girl. What type of surgeries did she have to go through? Any to improve functionality?
This is so great I’m 56 year old and have never known why I was born this way. My doctor never seen anything like me before. Both my hands have short fingers and two thumbs with nails and one pinkie with a nail. And one clubfoot and the other foot no toes and lots of scar’s on my feet and ankle and my hands. But nothing keeps from doing anything. Thank for the information. I was born in 1960
Greetings Pam. This site sure is an eye opener for many of us. I was almost 60 when I found out. Some fine people here.
My class of 6th graders is looking for a 3D hand recipient which we will print in a color of choice.
email me if you know of a school age child who could use one such hand.
sincerely,
dvial@volcano.net
Ms. Donna Vial, I’m 12 years old and I was born with ABS, I have a nub for a left hand.
My email is: roten.hannah@gmail.com
Praying for your baby boy Jace
Hello! My little baby Daniel was born with several amniotic bands. One on his thigh, one under his opposite knee, one on each big toe and one on his second toe. Luckily all of his limbs and fingers have great blood circulation, so apparently they will just require some plastic surgery. He was also born with clubbed feet. I have a few questions: will massage help the amniotic bands go away?? They are quite deep, right to the bone and the muscles kind of stick out irregularily because of them.. And do amniotic bands cause club foot? Also how do amniotic bands occur? I didnt go through any trauma which apparently may cause it… I have a bicornuate uterus and my placenta was at the front… Thank you!
Hello Annika,
Hi Annika, Thanks for sharing your experience.
It is common that Clubfeet and ABS occur together. Please visit my other site http://clubfootclub.org/ for information about clubfoot treatment. My son Evan was born with bilateral clubfeet as well as ABS.
ABS occurs randomly. It’s not known to be caused by trauma during pregnancy. I don’t know of any research that has identified the cause(s) of ABS.
I encourage you to join the ABS facebook group to connect with other parents.
I am a mom to be for the third time. Yet another boy. I have had the worse 30 days. Been shot at robbed found out my partner was cheating on my birthday and living in my car. I went to the hospital tonight due to the worst lower back pain and began to move to my tummy area. I am 16 weeks and 5 days. I knew something was wrong when the er ultrasound was going on 30 minutes. I found out tonight my baby has atomic band syndrome. I have been crying non stop. I’m ready my appt on Monday it seems so far away it is Saturday at 1 am I can not sleep. I pray to God please let my bsby be ok and beautiful. I rather be forsaken me then my child. I’m so worried to the many possibilities that ot can be. Please pray for my baby boy Jace on way to be healthy happy beautiful baby. I will keep updates of this nightmare. Thank you nichole .
Hi Nicole, I suggest that you join the Facebook Group https://www.facebook.com/groups/2353684860/ – It is a closed community that offers great support.
Hi Ruth, my granddaughter was born with Amniotic Band Syndrome, the middle two fingers were not developed, and it caused a cleft lip. She is writing with her hand that was effected and has beautiful hand writing, doesn’t let it stop her, and her lip was repaired at Riley Hospital for Children. Every once in a while some kids make fun of her hand but we have taught her GOD made her that way and she has the best spirit and soon becomes friends with them.
Hi Deb,
Thanks for your comment. It’s great to hear that your granddaughter is doing so well. She sounds like a confident, lovely soul.
I was born with ABS, as well one clubed foot and high webbing in my fingers. I am currently 43, born in the US. Wondering if cigarette smoking or exposure to second bad smoke is related to this defect.
Hi Todd, I don’t know of any documented connection between ABS and second-hand smoke or smoking. I wasn’t exposed to smoke when pregnant with my son.
Ik ben oma van Hanne en zij is geboren op 15 april 2016 , ze mist de vingers aan haar rechterhandje door abs.
Mijn dochter zou graag in contact komen met mensen die hier ook mee te maken hebben maar bij ons in België zijn die mensen moeilijk te vinden, mijn dochter heeft een groep aangemaakt op fb (ABS Belgium) in de hoop zo contacten te leggen maar er is geen respons……
Ik hoop dat dit gelezen wordt om zo bekendheid te verkregen in België.
Met dank
Linda
Translated by Google Translate:
I’m Grandma Hanne and she was born on April 15, 2016, she misses the fingers on her right hand by abs.
My daughter would like to get in touch with people who deal also with here but with us in Belgium are those people hard to find, my daughter has created a group on fb (ABS Belgium) in the hope to make contacts but there is no response ……
I hope this is read in order to obtain publicity in Belgium.
With thanks
linda
I also have Amniotic Band Syndrome. I was just given that diagnosis 5 years ago. I am 38 years old. So, never really knew what was wrong with me growing up. My ABS affects my left leg and foot. My left leg from below my knee is much larger then my right leg. my middle toes were all fused together when I was born and I’ve had 6 different corrective surgeries though the course of my life. I am a mom now, and think that’s great that you’ve put this together to help you son!
Hi! I’m 17 years old, and I was born missing my left hand. Ever since I can remember, any time a kid met me, before they even asked my name they would ask, “What happened to your hand?” Literally every person who has asked me about my hand has said those exact same words each time. Lucky for me, most high school kids know better than to ask questions. So, for any kids feeling like the gawking, staring, and constantly being asked about their defect, just keep in mind that IT GETS BETTER. Trust me, I know. Someday you’ll find your people, and they’ll accept you without hesitation. On occasion, a few of my friends have even forgotten about my missing hand altogether! So no matter what life throws your way, remember to keep on keeping on!
Fiona, I have abs, but I have part of my left hand, a thumb, but not four fingers. You are right. But let me add that we are all indebted to the disability rights movement.
I have the same issue, no fingers on my left hand. However, I’ve had different experiences with people. I am 71 years old and during my elementary and high school years I can’t recall people inquiring about my hand at a first meeting. I have learned, that because of my age, today many people assume it is a war injury ( Vietnam age).
What is interesting is that almost all of my doctors have not inquired.
Dear karley
yes, my little baby has come out just fine thanks God. am now a week away to celebrate her baptizim ceremony. at that 20 weeks , i was so worried as the doctor simply told me that he can’t do anything about and to just wait and see. so As Ruth hoped and confronted me that thin band turned out to be innocent band. besides, doubting the first ultrasound result, i also went to other doctor where i got second check up and he told me that time that , yes there is Aminotic Band but it is not those kind of bands that will leave you to worry. he said this is something they encounter very often that results with no adverse effect.
Hi I’m 13 years old and I’m missing half my right arm. I was teased for a lot of my life but I stayed strong. I was the first one in kindergarten to tie my shoes and do the monkey bars. I am posting this comment in hopes to reach others to tell them, stay strong!
Way You Go Debra!
Hi, I’m Becky. I have a 2 1/2 yr old granddaughter that was born without her left foot. ABS.. She has a prosthetic and does really good with it, however when she’s at home or my house she wants it off. She can run or walk without it but for the last week her stump has been bothering her and looks a little bruised. I think it cause she is walking only on it. We have an appointment with her orthapedic next week but I would like to ask y’all if there’s something she could wear over her stump when she’s at home and doesn’t wear the prosthetic foot. I was thinking that something with a cushion but I don’t know much about it. Please if anyone knows the info would be greatly appreciated. Thank you
I few ideas for protecting your granddaughter’s leg. Maybe modifying a Heelbo (Heel/Elbow) pad, like a volleyball knee pad, to wrap the distal end. There is a few padding products that could be placed inside a tube sock – contour foam or slow foam. They are soft and pliable. The occupational therapist from your local school district or one suggested by her physician could be a resource for modifications. Just a few thoughts. Hope she is doing well.
I am looking for a support group and/or parents of babies born with ABS in or near the south Oklahoma City area. I have a friend whose daughter was recently born with ABS affecting her left hand. My friend needs someone to help her nagivate her way.
I am a 61 year old that is just finding out about ABS. Born in 1954 , there was no information for my parents when I was born with ABS affecting my right arm and hand, three digits on my left hand and two webbed toes on my right foot.
It is amazing now to know this was not caused from medications, as the doctors told my mother . The guilt she carried as a mother must had been insurmountable.
My life has been full and nothing has gotten in my way. I am married to an amazing husband of almost 42 yeas and we have a wonderful daughter , son and 3 beautiful grandchildren – None of which were born with ABS.and if they had been , would be loved as much as my family has loved me.
For all who have children with ABS , I just want to say, love each child, giving them as much independence as you would any child and watch them bloom and grow.
My son Thlabedi was born in 1993 with ABS. As an African mother at 20 I have never heard of this before. His left hand was affected and his right two toes were fused together. Doctor Biddulph joined his arm with a hip bone as it had none in-between. He has gone through a number of operations to try and fix his hand and gone through physiotherapy in order for him to be able to use his hand. None of my other kids had ABS
My son Giovanni was born on September 26, 2015, his due date, via emergency C-Section as he was breached and I was having contractions. He was born with ABS around one of his feet and three toes partly amputated. I thank the Almighty that his foot was not amputated however it left an indenture around his foot. He has his big toe and little toe (with a band around the little toe).
He recently had surgery to removed the band around his foot and skin grafted. It is healing well with little scarring.
I sometimes still feel as though I did something wrong that caused this defect. My first child at the age of 30 years, we took all precautionary measures that were recommended by the doctor/s and antenatal clinics. However, after reading several websites, speaking to local doctors and becoming aware on the cause of ABS and seeing my son grow beautifully and perfectly despite his defect, we (my husband and I) are at peace and very elated and blessed with our loving, happy, perfect son. Thanks for the information and story shared.
Great outcome, God Bless. I would like to know did they ever see the band in the ultrasound before birth? I’m 20 weeks and I was just told I have a band in my sac but it has not reached my baby yet.
Did u find out about bands in the ultrasound
My son was born with ABS affecting his right hand where three of his fingers are amputated in utero above the knuckle. He has upto now had no problems but is now complaining of pains in these fingers. Has anyone else had this issue and could anyone give me any advice.
My father-in-law had a horrific motorcycle accident and finally had to amputate his leg from the knee down. He has talked about phantom pains where his leg and foot is missing. It was explained to him that the nerves still expect to be at part of the miss pieces. The connections take time to rewire to the brain. It’s weird but it’s real. I do not rembr if there was any medicine that helped or not. I do rembr him just rubbing it and massaging it the of his stub. I think he was very blessed to have the fingers he has. He will do great.
My son Eddie was born with only half of his left arm due to amniotic band syndrome. He is a twin but the twin was not affected at all by the amniotic bands. I was told that it is random and not anything that I did. I expect that Eddie will do amazing, and has thus far. He is 6 months old and is ahead in his developmental milestones. He rolls all over, tries to sit up on his own, says mamma and baba, and holds his own bottle. That’s right, he has half an arm and is able to hold a bottle on his own! He is well loved and an amazing gift!!
Absolutely! Before long he will climb rock walls and amaze all those watching Him! Nathan Now a senior plays left handed jazz trumpet and loves to be challenged by anything. I’m amazed at how their brains work twice as much to decide how to make life work for them – but it makes them very smart in the process. Good luck to you and your family.
I was told it was not genetic. I’ve had two other children and there were no issues. Hope that helps. Even if it did happen again…. there is nothing you can or cannot do to stop it. I would tell Nathan’s friends just as you have blue eyes and she has brown, he as one hand and you have two. Simple as that. Good luck to you and i wish you a house full of children….(IF that’s what you want!)
Hello my name is Raquel Washington and I have a amazing baby girl who is now one who was born with abs leaving the fingers in her left hand shorter, at first I was devastated asking and crying why because I took care of myself etc. but she is brilliant and uses her hand jus fine I have my days but I wouldn’t trade her for the world. I do have a concern about my second pregnancy scared that it will happen again
Hi Raquel,
You don’t need to worry about it happening again. ABS isn’t genetic. My second son wasn’t affected by ABS
I lost a child in utero almost 12 years ago. Wow, typing that I really can’t believe it’s been that long. The bands wrapped around our baby’s neck leaving that pregnancy unviable, according to our Dr’s at that time. We had realized this circumstance during early dating ultrasounds, it was devistating. I have buried this deep in the recesses of my memory but am sitting here watching Greys Anatomy season 6 episode 11 on Netflix and can’t believe this syndrome is being featured, which brought a flood of reflection. Best of luck to the rest of you with better odds than we encountered. Feeling sad and stricken. Xxo
Hi, my name is Ashley, I’m currently 22 weeks pregnant. My husband and I just found out that our baby boy has suffered from ABS, and he his not capable of surviving. I have to have a surgery in a couple days to have him taken. It prevented his brain from growing and functioning properly, causing many other problems such as organs being on the outside of his body. This has been the hardest thing we’ve ever gone threw… Anyways, my question is, is there a chance this will happen again with a future pregnancy? I don’t think me or my husband can handle the pain of losing another baby.
I am so sorry for the news you are dealing with. I was told when this happened to our son, that it is a rare occurrence and not genetic. I have had two other children that were not effected by ABS. If you don’t mind, I’d love to remember you in my prayers….Please stay in touch.
Pam
Ashley I am so sorry to read this, you and your husband must be devastated. There is a Facebook group set up to support parents and families of babies born sleeping to ABS. https://www.facebook.com/groups/607902962609187/?fref=ts
Just found out. I’m so sad and mad at myself
Hi I just found out today that my 20 weeks scan showed my daughter might be born without her left hand. The scan shows there is something wrong with it. I did have three seizure in the first 6 weeks of pregnancy and at my 12 week scan everything was showing she was healthy and had all ten toes and fingers. But then I started taking seizure medication because my doctor want me to because he felt it would have been saver for me and the baby. He did tell me my baby has a small chance of having a problem. Well I guess that small chance was wrong. Because now my doctors is saying that she could be for with no left hand and it was because I was on the medication. And I was only on it for 2 months.
Samantha, please do research on ABS. You will find that a band may have wrapped around your baby’s arm causing it to not for completely. It’s been proven that loss off amniotic fluid lets bands roam freely in the womb to wrap around anything they can. This is in NO WAY YOUR FAULT!
Please do the research so as to not put blame on any one. Your child will be perfect as she is and will amaze you in ways you could never imagine. Your baby is going to be an amazing little person in your lives. Take care
If you join the Facebook group https://www.facebook.com/groups/amnioticbanssyndromeabs/?fref=ts you will see how well little ones cope with ABS. You are not to blame, so stop beating yourself up.
Please check with the doctor again. I’m sure that they didn’t intend to give you the impression that the medication would cause ABS. Read through other stories on the site and you’ll see that none of the other Moms took that medication when pregnant. It isn’t your fault.
Samantha — It took some time, but eventually I came to realize that we’re all just statistical impossibilities. It’s hard not to be able to know WHY something happened, but in the case of ABS, there’s no causal relationship with genetics, chemicals, alcohol or any other maternal activity. It just happened. The kids learn to deal with it, they come up with some ingenious ways to use what they’ve got. Just let your daughter know you love her and support her, that you’re there to celebrate or console, that her life could turn out to be amazing. I’ve got ABS and I’m 64. Life has turned out WAY better than I ever dreamed.
My son was born with ABS, it was unexpected but he’s amazing. I love him to pieces. #ABSlove
Hello dear people
my wife has just entered her 19 week pregnancy,just a week ago (December 3 /2015) and suddenly, the ultra sound scan showed that there is one thin band on the amnion , i am so worried and wonder what to do if this is going to turn to ABS. I just heard of this thing for the first time and i had one son before with out any complications. the doctor said it is not some thing to worry about at this stage and he told me to follow it closely and make more frequent ultrasound scans in next time. I saw the band from the ultrasound and it is a thin floating string like structure just flowing in the amniotic fluid. the doc said so far it has not been attached to any part of the baby who I already call her Veronica for a reason. what can i do to avoid this adverse effect of ABS before it is too late. is there any known medical treatment or prevention measures to lesson or avoid at this stage? please help on this.
thank you
Fikreselassie , From Ethiopia
I am Not a doctor but I was told with Nathan that his ABS happened because of how “raw” he was in the womb when the fiber landed on his wrist. That there is a time that if anything touches the baby it will stop the growth. I would be asking about when that critical stage is. That may be why the doctor just wants to keep an eye on it with more ultrasounds. You may be past that point.
Hi Pam Niell
if your comment is in relation to my request, again I thank you for your comments. I just want to clear to you that so far no fiber of that band has landed on her wrist of any part of her body is there a known time or time period in which we call the period as critical stage to remain for the bank active. i.e. is the band effective only until some period where the baby’s body part will no longer be affected? if so until which week could that be? for example my veronica is 19 weeks now.I saw her legs, finger , head, umbrilcal cord etc being in good condition and far away from that damn BAND. what possible action could be taken just something better than sit and wait to see what would happen?
thank you again. Fikreselassie Ambaw, Addis Ababa, Ethiopia
That would be a question for the doctor. I tried to specifically find the answer online to that “critical time” but nothing would answer me clearly. Nathan’s ABS was missed the first time and so it was much later (35 weeks) when we discovered the missing hand. This was also 17 years ago and the technology wasn’t as clear as it is today. They weren’t looking for it the first time….so they missed it.
I’m sure since the doctor is aware they will be very diligent to monitor it. Take care and All the best to you. Pam
Ok. noted and thank you very much for your valuable advise Pam.
Hi Fikreselassie,
I’m not a Dr. but my understanding is that there are innocent amniotic bands that often show up in scans and never put the baby at risk. It is good news that the Dr. said the band isn’t touching the baby. They will want to do follow-up scans to monitor it.
Hi Ruth
I really thank you for the new hope that there is a thing called “Innocent amniotic bands”. yes, the Dr. said he wants to follow -up with more scans and so far that single stand band has not touched any part of its body. It just simply floats from the placenta in side the fluid. can you tell me more about the so called ” innocent amniotic bands”? given the situation here in Ethiopia (Africa) we are not lucky enough to get as detail information as we are supposed to.
I was simply told about the shocking news that my baby girl(Veronica) who is only 19 weeks old might be possible to be exposed to those effects of ABS depending on the strength of the band in the future. i also heard that it may prevent her to change here position while trying to turn her head down wards in the preparation to delivery.
what is the effective period( weeks) up to which the band might remain capable of inhibiting the growth of her body parts if it touches them in the future anyway? all the pictures and photos I saw on the web are very shocking. what possible thing can I do to minimize or avoid any of this? or where can i take her to get advanced treatment before it is too late? please advise me all of you as i have no other source of information.
Thank you once again
There are some cases of in utero surgery to remove a band. But I believe that Fetal Surgery is risky so they only do it in extreme cases but check with your Dr. If the band isn’t touching the baby there is nothing to do and nothing to worry about.
ok. Thank you for your valuable advise Ruth
Dear Ruth and members
I writing this with huge excitement and joy because, i was almost in terrible stress during the past 6-7 months when i wrote you that i was told that my baby was under the threat of ABS. I got very encouraging suggestions and advises from Ruth that some times there is a thing called “innocent ABS”, which finally have become the case. Yesterday, my little one has joined this world and the first thing i did in the delivery room was i went straight and checked every part of her fingeres, legs and hands and whatever could the ABS said to affect according to some sites i read in the net. Finally, just kneel down and thanks God for hearing me out during those anxiety days when even the doctor used to tell me that he had nothing he could do and repeated that the only way is to just wait and see.
my anxiety was very high because some of you have also told me that some times there is also possibility that the effect of ABS may not be visible in ordinary ultrasound and suggested to check with 4D or MRI, special ultra sound. to worsen the thing that kind of special ultra sound is not available here in the whole of Ethiopia, making my eagerness very high till this day. my stress was so high that i went to the biggest Church here in Addis where the inside was decorated with pictures related storries of what has been written in the bible, eg. curicification of Jesus and the like, i saw picture of lady cleaning Jesus’s sweats with her piece of clothes. then i felt that ,Jesus could clean my tears just like what that lady did to him. and if that is the case, I will call my little baby after the name of that lady called “Veronica” hopping that her name could also clean my tears too.
in any case, now, God has permitted that my “Veronica” is free of any complications and this has ended all my worries and tears. I got her birth certificate with the name of course, is “Veronica Fikreselassie Ambaw”
thanks all team, for helping me out, comforting me when i didn’t have any idea of this ABS thing. if it was not for you valuable advises, i wouldn’t have don’t every thing i could including promises to myself and to God.
Congratulations on the birth of Veronica! I’m happy that you found the website support helpful.
Hello, I wanted to know did your baby come out fine? I’m 20 weeks and I have a band across my sac but it has not touched my baby yet. I pray everything went well and for me as well.
I think this is a wonderful site and hearing such inspirational stories makes me very optimistic about the road my grandson has to travel. Thank you all
Hi everyone my name is Nicole and 30 years ago I was born with ABS which effects both my hands. I grew with amazing parents and family who pushed me in every way not allowing me to say I can’t. From Birth to the age of 8, I had multiple surgeries trying to do God know what now. I’ve never let my fingers stand in my way until recently. I work for Safeway Grocery store in Washington State, and I was promoted to be their Frozen Section Supervisor. When I first started I was ok the cold didn’t get to me that bad, but then I started working 12+ hours a day in and out of the big deep freeze. Wearing gloves made for my fingers and couple other pairs on top of that. I would push through the pain because that is what I’ve always done as child to young adult. After working in the freezer for 4+ weeks my fingers started to feel weak, stiff, numbness, with pins and needles feeling through out my hands. Tried to tell me I have carpal tunnel. I don’t believe them so I’m in the process of seeing an Orthopedic doctor. My fingers are turning different colors and one is infected and they can’t get the infection to go away. I’m very frustrated and don’t know what to do to fix it. Has anyone had anything similar happen to them or their loved ones. Just looking for some answers.
Thank you,
Nicky
Starting School Tip #1:
My son is now a Senior in HS. He was born without a right hand. He has wrist muscles which has helped over the years but it was immediately determined it was caused by ABS. We are very thankful that he has adapted and is now working with a prosthetic to keep shoulder and back problems from occurring in the near future. He plays left-handed trumpet and loves it….. big Jazz fan. He’s struggled as all would but overall, his mood is usually playful about it and even wanted a shirt that said “Don’t go in the water” when he was at the beach. He climbs rock walls and even cross-stitched with his grandma.
One thing I would suggest to the parents of a child about to enter school for the first time (and even the first few years of school) is to talk to the parents on parents night (usually kids are not there). Explain to them that there child will be around a classmate with a special hand or arm or finger or toe. The idea is that those parents explain that they are not in pain and they are not hurt. They are just like you but without a hand….etc….. My big example was you have blue eyes and they have green….you have two hands and he has one. Keeping it simple and just a matter of fact. This was a huge help! They look forward to meeting my son and didn’t just sit back and stare at him and avoid him.
I know you will have many days of frustration but know that this child is also wired differently. God made them to be able to re-think everything in order to make their day happen. They have to process everything differently than you. Realize this and embrace it. They will be the most interesting person in the room!
Love this, Ms. Niell. Thanks!
My daughter has amniotic band syndrome (abs) it amputated her big toe left side and the tip of the next toe over. Also her right ring finger and fused middle and pinky on the right hand. She was very lucky to be born with her right foot where there was also a band around her ankle. I received surgery at 6 months along to try and release the band, it was a success and she has not only her foot but function in it. Doctors estimate she will have no problem developing physically and she’s already ahead mentally.
My grandson only has his pinky finger on one hand. Do you suggest I apply for disability for hom
The trumpet will work. It did for me and I don’t have any fingers on the left but a stump that helps hold the instrument
Thank you! Is it fun to play? I just wasn’t sure.
Me, too.
Go for the trumpet.
I was born in 1946. When I was delivered the doctor told my Mother that she had a healthy boy. However, he will never play the violin.
Hey! I’m back again! I just have some questions. I really want to play a band instrument, but I can only really press down four fingers at a time to cover holes to create notes and such, because my hand that has ABS can’t hold down fingers because, well, my fingers are just kindof little nubs of skin. LOL. I DON’T want to play the trumpet, tuba, baritone, or trombone. I play violin, but the band doesn’t accept string instruments. I guess I’ll do percussion if it’s my only option, but any ideas?
P.S I like the idea of a clarinet or a flute, but I don’t think that’s a possibility.
Hi I was born 65 yrs ago w/3 fingers banded on my left hand (short digits)my thumb and 1st finger is normal my right hand I have a short pinky finger both feet w/banded toes (short digits) and a club right foot after surgery as an infant through Shriners Hospital I am able to walk but my right leg and foot is smaller than my left leg and foot and my left foot and ankle appear to be swollen all the time which makes it hard to find fitted shoes I have to buy them in a larger size and stuff the toe of each shoe due to one foot is small and the other is large I have went my whole life being self concious and I still hide my body to this day and my joints are beginning to ache a lot.It’s so hard to meet people you just hate the stares but life goes on you have to make a living for yourself
About one foot being larger than the other, I know a man who buys two pair of cheaper shoes in two sizes. He just has to discard or donate the other two shoes, but he’s more comfortable with a shoe that fits each foot. It is not noticeable because most of the time he is in long slacks.
I found this link at the luckyfinproject.org
Another Way To Play – Instrumental Adaptations for Musicians with Limb Differences
https://sites.google.com/site/instrumentadaptations/home
I hope this helps.
Hi I’m Veronica. I was born with three fingers on my left hand which always make me feel uncomfortable around people – shy not being myself at all times – always having low self esteem. Please what do I do?
Vera —
First off realize that you have excellent problem solving skills and have been practicing them since the day you were born. Also, you’re determination to successfully complete these challenges is unsurpassed. As for other people, you can’t let them dissuade you from your goals, but you can have some empathy, so you know how other people think and act and why.
These characteristics make you a very valuable employee. And with the rest of the peeps out there, I suggest a quote from Richard J. Daley, former mayor of Chicago.”If you don’t like it, there’s mistletoe on my coat tail.”
Hang in there Veronica, things are looking up for a great success.
Everyone in this world is different. That isn’t a bad thing but society makes us feel that we need to all conform and be the same. I know it is hard to stand out in a crowd. Our differences make us special. Growing up I thought everyone around me was judging me but they really aren’t. Be who you are. Accept other people for who they are and how they are different and they will accept you right back.
hi guys , im morgan . i have ABS . i was born without a left hand , well without fingers on that hand . i understand that people underestimate us , but honestly theres nothing that i cant do . yes i may not have a full hand , but i can do anything a normal person can do . ha no im not normal , i admit that , but i am strong . honestly it has had a few points where i wish i had a full hand . when i look at others , i feel different . but over these past few years , i realized that different is beautiful . i have had a few moments where i have underestimated myself , but everyone does that . ABS has changed my life , and i wouldnt change this for the world . i think that people who make fun of people with “disabilities” dont understand what its like . they get that we cant always do everything other people do . i cant snap with my left hand , which does make me kinda upset . this has given me so many opportunities , and i wouldnt change a single one of them for the world .
Do not fear….I was born with one arm, missing my left from elbow down. My family was great…I was mainstreamed, be affirmative, supportive, do not hold your child back with your fears…Encourage them to go after their dreams! Never tell them that they can not do something because they “only” have one hand or 5 fingers etc….it is amazing what any human can do if affirmed, validated, accepted for who/what they are….give them the opportunity to excel in any aspect of life……being born different than the majority is not a bad thing…she/he’ll BE One in a Million, WORTH much to many…foster a good sense of self esteem despite differences……Geniuses are “different,” different is creative!!!!
Erik and Frances —
Thanks for your great post! Best of luck to the two of you as your new life beckons.
My Fiancee and I both have ABS, She has banding on one hand, I have banding on both and CP in both legs and other problems that have taken to date 35 procedures to live a happy life.
What I want to tell you all, is you can survive anything. I’m 36 now, and I couldn’t have come this far without the love and support I have. So to you parents of kids with ABS, they are stronger than you realize. They will overcome anything, nurture and love them and you can help not only them but yourself in the process.
To you kids and young adults with ABS(Or anyone with ABS for that matter). Everyday may be a struggle, but I am living proof you can make it through anything, I’m a firm believer in positive thinking, I suggest watching Coach Flowers I am a Champion speech LINK: https://youtu.be/yX39J_YyKbs on Youtube, I watch it and The Secret scrolls video LINK: https://youtu.be/phL0RLKL8bc which is all about positive thinking. And they help me everyday I am struggling or having negative self thoughts.
You are all amazing people, never forget that. Never forget that many of us are cheering for you, with much love…
Erik And Francis
My name is Steve, I’m 63 years old and I have ABS. [which wasn’t diagnosed until I was in my 20s] It’s not a real bad case, but I have 4 limbs effected; webbing on the left hand, good thumb and pinkie on the right, bilateral club feet. The bands were removed and fingers separated at 18 months, I had a few plastic surgeries when I was between 9 – 14, to lengthen my fingers. As most everyone else here, I grew up to be quite independent. I wasn’t much of a jock, but I did read a lot and developed a strong interest in photography. As a kid, I was not much into fantasy, the Cinderella story didn’t really resonate, but I did like science and got into model rocketry when I was 10 or so. I turned out to be very lucky. Things turned out WAY better for me than I ever thought they would as a kid. I had a good career in high tech marketing, married a wonderful woman who I happily shared my life with for 31 years and traveled around the world together. I live in a wonderful community.
I experienced many of the same stares and blurted out questions that you all describe, so I guess I grew up to be more than a little distrustful of other people and authority figures in general. It wasn’t until I graduated college that I entered a therapy group for young adults [not disabled]. I finally realized that although other people didn’t necessarily experience the same problems that I did, most of them felt the same way I felt from time to time. It was the emotional identification that allowed me to relate better to others. I liked the group process because I got immediate feedback on my thoughts, feelings and behavior. It helped a lot. It was after a couple of years of therapy that I met my future wife and was able to develop the intimacy that such a relationship requires.
Advice to parents: Don’t blame yourself or your kid, you’re both statistical impossibilities and you’ve just gotta work with the materials at hand. Give your kids enough space to accomplish things on their own. They might not do things “by the book” but they generally do figure out a way. They have to try stuff. Encourage exploration and if they fall, let them pick themselves up. Your ABS kid will become pretty durable, will take pleasure in his/her accomplishments and will develop amazing problem solving skills. Try to make work seem fun. Do exercises together. Make a hard-to-develop skill into a game. Don’t make challenges grim, make them opportunities to grow. And they will grow strong and centered.
That’s all I’ve got for now. But if anyone wants to continue this conversation, please feel free.
I hope it’s okay to post here. One of my best lifelong friends has a 7 year old son named Aiden who was affected by ABS on two extremities and the right side of his face. She was his champion and his advocate and sadly passed away this weekend. There is currently a fundraiser happening for the family member who will be raising Aiden and his twin brother Kreed to help them through this painful transition. In addition to fostering two grieving children, the family will be assuming the responsibility for Aiden’s ongoing medical care and the learning curve associated with ABS. Every single dollar helps and I wondered if this community might be willing to help. You can see their story here: http://www.gofundme.com/rg8j9jb8
hi All, so i’m missing the top half of three of my fingers on my left hand. I just wanted to say its made no difference to my life what so ever. Doesn’t bother me now and didn’t bother me when i was a child. It wasn’t till I had kids myself that I realised what my parents went through, they must have worried about it a lot more than i ever have. Lifes worked out just fine for me 🙂 Yes there has been the occasional joke, but they’ve usually been funny and frankly i’m fine with that, there was even something at the end of my best mans speech about giving me a big hand…I find people either spot my hand and mention it straight away, not mention it ever or wait until they are drunk and ask me – None of these bother me. Yesterday I swam 2.5 miles, I’m rubbish at swimming, my hand probably doesn’t help but i’m pretty sure if i had a full set of fingers i’d still be rubbish at swimming. I guess you just have to play with the hand you’ve been dealt…
In my opinion life could have been a lot worse 🙂
Hello I was wondering if any one here could help me …. i had an ultrasound last monday that stated the following
Thicken echogenic band noted inferior to placenta most likely
representing amniotic band, with anechoic area between measuring 26
x 11 x 4 mm.
I am in the middle of switching obs because my current ob did not help me understand this… I do not know if what is stated here means my baby does have ABS or that it is posible…. the doctor also did not want to do any further testing for the next three months which means I would wait three months just to find out if this is even a concern…. I am hoping someone here can help me understand…I never heard of ABS before searching amniotic band on google…
i am 16 and i am not sure if this is ABS and i am quite depressed about my deformity.
I just wanted to know what has happened to me, I am missing my middle finger on my right hand, i have a little bit of my middle knuckle and I am not sure if it is abs… My dad has told that my mother had something wrong with her feet and I am extremely depressed hoping that my child does not get the same thing… If I could get a little bit of advise because this has caused bullying throughout my life and I would not want my child to go through the same experience. I have researched about it and electrodactyly is not the cause of my deformity. Please somebody get back to me 🙂
Hi, ABS is not genetic. You don’t have to worry about passing this on to your kids. There is a Facebook group that is private. It would be a great place for you to get support. https://www.facebook.com/groups/2353684860/
Hello: Our son was born 23 years ago with Amniotic Band Syndrome, and as a result his right arm did not develop just below the elbow, so he is without a lower arm and hand. Growing up it was his choice not desiring prosthetics, yet was an all-star baseball player (pitcher), guitarist, trumpet player, etc. But when he reached adulthood, the underdeveloped side of him started to rear it’s ugly head with severe muscle imbalance and pain. He has chronic pain, is very depressed, unhappy, and has no positive outlook on life.If you look at him, the left side of him looks like a strong adult; the right side looks like a 12 year old. He refuses prosthetics even now, but we don’t know what to do. Does anyone have any experience with this, and are there any suggestions to help him? It breaks our hearts to see this. Growing up we sincerely felt we were doing everything right, and we were so proud of all he accomplished. He’s seen doctors, psychiatrists, counselors, chiropractors…with no solid progress in results. Help? Thank you!
Brad — I’m 63 with ABS on all four extremities. I had similar issues about that age. I can’t really comment on the pain issues, but the psychological, oh yeah. I eventually got into a group therapy setting and it made a tremendous impact. It was not a thing for disabled young adults, but just normal young men and women who were just starting out in life and having some problems. Once I opened up to it, I got instant feedback on the behaviors that we’re causing me problems. I realized that people didn’t look at me like a freak. And that others, who didn’t have ABS, had similar emotions and self concepts to my own. After a couple years of therapy, I met a wonderful woman, we got married and shared a wonderful life for 31 years. It’s a commitment, but it had the greatest results for me. Maybe it could help your son.
Good morning dear people
My name is Jorge, Im from Mexico city, Im 27 years old, I have a 2 year old girl that I love most, more than anything in the world, shes the cutest and sweetest girl. My baby girl was born without her middle finger from her left hand, I donno if its ABS, the doctors only tell me it is an anomalie. I wish I could know what happened to her and why, none of my family or my wifes family has any ammputated body part.
Right know shes enjoying life, her family adores her so much, I enjoy her smiling everyday and I never want to stop her from smiling, Im worried when shes a little older and will get depression or something and I wont know how to talk to her and handle things with her. I would do anything to her to have a finger, maybe a surgery or prostatic finger if she ever wants one. I just donno where to go to get her one. I hope anyone would give me suggestions and tips, I would appreciate so much.
If you want to see my baby girl I would love to share you my facebook webpage
https://www.facebook.com/georgeber06
Thank you
My husband was born with 3 missing fingers on his left hand. I am almost 20 weeks pregnant with our first child and we will find out the sex of the baby soon. I am worried our baby may have missing fingers as well. I have been trying to research information about a parent having missing fingers and the chance of the baby having it and couldn’t find much on the Internet. As far as I know there is no one else in his family that has this. I was hoping to find some reassurance on this site. Thank you!
Hi Dee,
Amniotic Band Syndrome is not genetic. Relax and enjoy your pregnancy 🙂
Hi Ruth,
Thank you for your comment and the reassurance!
I am a 69 year old Grandfather who was born with no fingers on the left hand .I have 3 children and 6 Grandchildren all of whom have perfect hands and feet. According to my research, there is no genetic issue with amniotic band.
Hi Jim,
Thanks for your comment! It was really difficult trying to find information on this and my doctor didn’t gave a lot of info for me unless we went to a genetic specialist, so thank you! I feel much better!
Hi, my name is Deneshia McMahon. I am currently 31 weeks pregnant with a little girl. I have a four year old already. I recently found out that my daughter that I’m pregnant with is missing her ring and pinky finger on her left hand. The doctors cant tell me anything “Direct”. They keep giving me possibilities. But I assume that you really wouldn’t know until you give birth. I’ve cried for months. But working with people with disabilities, gave me life. It could be alot worse. Just to imagine your baby born without their fingers is mind bothering. I set an appointment with the orthopedic, but I’m pretty sure they cant give me any advice. I dont want her to have prosthetics and I want her to live her life as a normal child. I just know when she’s a toddler it wont bother her, but once she’s old enough to realize things, I dont want her to go into a deep depression. Im trying to stay positive. I really am.
My Daughter was born missing her forearm below the elbow on her left arm. I had the same fears you have but, my Daughter is doing well and she never got depressed when she was older and saw she was different.
That’s awesome!
My mother has ABS and she is the most beautiful, loving person I know. I wish she saw herself the same way I see her.
This is by far the sweetest blog/ comment on here. Thank you for telling her how beautiful she is inside and out. I promise sometimes its all we need to hear or read to make our day that much better.
Evening, I’m 32 and am now finding out I have ABS in my feet. My 2nd and 3rd toes on each feet are sare effected my right foot the 2nd and 3rd toes are short and on my left foot they are nubs. I would like to know if anyone knows a Dr. who could help me. I really want to wear cute sandals and high heels but I’m too embarrassed of my feet.
Put bright red polish on the toes you have, get some cute shoes and sandals and enjoy. And I’ll bet you will love it. The truth is most people don’t look at your toes and secondly most people accept us for how we are and will admire you.
Hi there Minkee. I am a 40 year old female and just yesterday found out that I too have ABS on my left toes. As a child, my mother would have me wear cute socks with my sandals so that I would not be teased. Which was never the case. As an adult, I refuse to hide my toes. I always wear open toe shoes everywhere, and it is true, very few people notice.
I’m so pleased to find this site. I’m 71 and believe as person with ABS I’ve seen it all. My fingers are missing on my left hand with a little stump for a thumb. It’s great for holding the needle when threading it. I only learned about ABS from an episode of Greys Anatommy and it just all made sense. I dislike the term disabled. I am not disabled, deformed perhaps but I can count the number of things I can’t do that people with 2 hands can. Except for musical instruments that doesn’t work except for a trumpet and my blowing didn’t work very well. My sister would tell me when we were kids I wouldn’t be able to do something. I’m not sure if that was to get me to try or maybe just to do it for her. I’ve been a wife, a mother, gramma, business woman and even did some politics. I can drive anything from a small motorcycle to a bus. Being raised in a small community where everyone knew me was easier as I wasn’t constantly asked what happened to my hand. To this day I still get asked and it usually starts out with “I hope you don’t mind me asking”. Yes I do mind as a matter of fact and I’d like to say it’s really none of your dam business nor is knowing going to make a difference in your life. But now I say ABS. inevitability their response will be I don’t know what that is so I simply suggest it’s too involved to explain look it up on the Internet. Let your child figure out how to do things on their own. We develop our own way of doing things. I relate to all the comments and I still hide my hand for photographs.
Hey Maylie,
I understand what you are going through, I remember those difficult years. My name is Pat, I am 47 years old and I have a missing left hand because of ABS. Reading your post brings back all kinds of memories, trying to fit in, trying to be like everyone else but knowing that I looked a little different. I did everything that anyone else could do, I played hockey, baseball, basketball, learned to drive a motorbike, became a Registered Nurse and accomplished many other achievements throughout my life. I remember my mother always telling me to put on a short sleeve shirt because all I ever wore was long sleeve sweaters, even during the summer months. I remember hiding my arm for pictures or just being out in public, I was 17 years old before I gained enough confidence to wear a short sleeve shirt and not care what anyone thought. I realized that I am different,but that makes me the individual that I am, it makes me special and it made me realize that most people do accept me for who I am.
Thank you, Pat! I will try to hide my hand les often now! 🙂
Hi! I’m a 6th grader with ABS on my left hand. I’m always having my hand in my pocket and I’m trying not to but I feel so self conscious!
I think its just a matter of perspective. Instead of hiding your hand you should show it and walk confidently. People will be curious to know what happened intially but once they know it will be very much acceptable. People are always curious about different things…just consider the situation other way ….if you happen to meet a random person with physical difference…would you not like and appreciate the confidence of that person if he/she showed it off rather than hiding it or trying to be self conscious….everyday just remind yourself that you are beautiful…and you are enough..
Hi,
I’m a 9th grader with ABS on my right hand (my dominant hand). I haven’t really been able to hide my hand, because I have to use it to write etc. I know it can be embarrassing to show your hand, but people are generally more accepting than you’d think. There will be stares and questions, but they’ll be answered and eventually stop (mostly). Life in general will be much easier after you don’t hide it anymore!
Hi all, my name is Samantha and I’m 26. I have a now 10 year old son who has ABS. These past years have been up and down in the aspect of how to get my son to accept his deformities without allowing them to be his only defining part. He has had 3 surgeries so far. Both of his hands were affected, he has both thumbs, one pinky and the others are either short or joined or not there at all. He is able to do most things but my problem is his confidence. I have done everything I can to make his world ‘normal’ while accepting things for what they are. I am looking for advice on how to boost his self confidence and have the courage to go for it. Any suggestions?
Hi Samantha — I totally relate to your story. My right thumb and pinkie work well together, otherwise… I’d suggest you help your son to find a hobby or pastime that he can get into. I did model rockets and photography. Have you got a pet? Does he like aquarium fish? Grow plants in a garden? Is he a sports fan? Like geography? Music? Art? There are many things he can try and see what he likes. In any case, please encourage him to read, because books can take him anywhere. I hope one of these ideas helps.
Wow! Wish I found this site 5 years ago! What an eye opener. I really thought ABS was rare and doctors didn’t know much information….good to know there is more people in the same boat sharing stories x
Hi My name is Sue and I am 46 – how did that happen?! I believe my disabilities are due to Abs. I was born with short toes on my right foot with no nails, short fingers on my right hand with no nails and a missing left foot. I have worn a prosthetic leg since 1 but to be honest life has been pretty good I have done lots and still loads to do. My childhood and teenage years were hard and I felt bullied and self conscious. I felt my life was ruined because I couldn’t wear short skirts and high heels but just typical teenage angst!! But nowadays people are much more polite. My work colleagues never mention my disabilities and I believe many of them are not aware. I have had ups and downs but that happens to us all as we go through life, I have 2 healthy children and a satisfying career. If any worried parents want to chat I would be happy to or speak to anyone with similar disabilities
. Of course as I was born before scans I will never really know the cause.
I am a grandmother. My daughter gave birth in Dec 2014. She found out at 28 weeks that her baby boy was missing his left arm below the elbow. It wasn’t the hospital that found this out it was a private 4d scan that saw his arm was missing, all paperwork had to sonographers sign paperwork as having seen both arms legs etc this was a big shock to all of us as she already had three children. We went through all sorts of emotions but what has been made worse is that she had no support before or even after, no one I think this is shocking, I went to the doctors to ask for information to be told its only an arm and offering me anti depressants I went there for help for my family. We even now have not seen anyone or any info. He is a beautiful boy and we love him to bits but how can they miss this and no help before or after?a
Wow… Where to start? 3 weeks ago we found out our beautiful daughter has ABS. However, she has multiple defects including anencephaly. We have been told by multiple doctors that she has zero chance of living but we are continuing to carry her and pray for a miracle (although, I will admit to slowly losing hope). We are currently 17 weeks. Last June we lost our baby boy at 17 weeks due to Fetal Cystic Hygroma – another extremely rare occurrence. Seriously, why can’t we just win the lottery? Anyway, it is nice to see we are not the only ones that all this crap happens to. It gets really tiring being so strong sometimes…
I really hope things worked out for you.
My son Caden was born January 5, 2015. He was 9lbs 1oz and healthy. As soon as he came out I heard the dr and nurse say there was a problem with his hands and feet. Caden was missing the tips of his toes on one foot and all of his toes on his other foot were banded together that caused three of them to fuse together. On one hand he was missing his index finger and the tip of his ring finger. His middle finger had constriction on the tip. His other hand had banding that connected middle finger to his ring finger, causing a bulb like feature of the tip of his ring finger where the banding was wrapped around and he was missing the tip of his pinky. The dr could not tell me why any of this happened or what it was. When I took him to his first pediatric visit I was told he had banding syndrome and there was no cause of it, it just happens. Caden is my fifth son and the only one born with this deformity. He has his first appointment this month to meet with a hand and foot specialist at Shriners Hospital. I’m going to stay as positive as I can and am still just trying to research as much as possible and educate myself on this as I can.
Just found this website. Wish I had found this website 3 years ago. I will be posting my daughter’s story later on this week. Even though they say that Amniotic Banding Syndrome is rare, there seems to be a lot of people out there, in the world, that have it.
The Amniotic Band Syndrome ABS group on Facebook is an excellent group, feel free to request membership.
Hi my name is Mayra. My daughter is 17 she was born with ABS and going through some rough patch at these moments can’t seem to find the group on facebook can you give me the right name please thank you
Hi Mayra, The group can be found here https://www.facebook.com/groups/amnioticbanssyndromeabs/
Oh sweetie you did nothing wrong. The most important thing you need to do is LOVE YOUR BABY GIRL.Treat her just like any other baby and she’ll be just fine. I’m 57 with abs. We thrive !!! Just love her.
I just found out yesterday at my ob/gyn appointment that I’m having a girl and that she will not have a left hand at all. This was very upsetting and the doctor said that it was Amniotic band syndrome and that it wasn’t my fault that it just happens. is there something i did to make this happen? is there anything i can do?
Hi Sami,
It is not your fault! Don’t blame yourself.
I suggest that you join the ABS Facebook Group. It is a closed group so comments there are closed and won’t be visible beyond the group. There are many parents there who have gone through the exact same thing. They will be happy to answer your questions.
thank you!
hi my name is lisa.i am 54 yo and have abs both hands and feet.i would love it if there was a group get together or seminar some where for abs education and support .if any one knows of any please let us all know.thanks and god bless you all.lisa
My son Riley was born with ABS. He’s now 5 years old and asking the typical questions of why am I different, I want to be normal etc. Does anyone have any advise of what i can say to hi other than keeling him encouraged and reminding him that he was specially made this way for a purpose?
Also, I was wondering if there are ever and conferences or seminars for those who have ABS and the relatives to be able to learn more and network with others?
Hi…i dont know about the seminars or the conferences held but there is a group on facebook and the members of the group are mostly the parents of kids affected with abs and the adults affected with abs. They are a great support and very encouraging..
Hi, Donese,
My name is Wendy, I am 48 years old and I am a teacher. I lost my left index and middle fingers to ABS. I remember 5 years old being rough for me. Other kids began to notice that I was different, and some were not very nice. But I always knew that in my family, I was loved and appreciated. My parents never sheltered me, but were very good to explain in 5-year-old language what ignorance and curiosity were. They helped me understand what the other kids were thinking and feeling. They taught me how to explain to the other kids that I was not “broken” or weak, and they instilled in me the belief that I could do ANYTHING I set my mind to!
Although most of my career has been spent with high school kids, I had the chance to work with kindergarten kids for about 3 years. They were by far my most curious students. I eased their concerns by talking to them about “finding Nemo” and his lucky fin! I explained to them why his daddy called it a lucky fin, and encouraged them to each give me a “high five” with my “lucky hand”! It showed them that the difference wasn’t to be feared or hidden, and soon, most of them completely forgot that I was different. For the first few years of school, it might not be a bad idea to talk to your son’s teachers to see if a similar chat with his classmates might help him be accepted. Answering their questions rather than ignoring them is, I believe, a good idea. You can even let them ask question when they’re all together. Some will wonder if it hurts, some will ask if the fingers are going to grow back. Some might even ask if they can touch. When given the chance to ask in an honest and open way, kids will often surprise you with how genuine they can be. Riley will likely look to you for support during the questions, but I honestly believe the results will leave him feeling accepted and less anxious about his differences.
Our 1st grandchild was born w/ ABS. I pray that he can adapt as well as Evan.
I am a 68 year old Grandfather. I was born with only a stump for a left hand. Curiosity will follow your child forever. However, he will compensate for his disability in other ways. I played football and track through college and had a wonderful, successful business career. I was concerned about having children but all of my 3 children and 6 grandchildren do not have the syndrome.
My daughter was born with ABS in 2004. We didn’t know until delivery, but she was born healthy. She a beautiful, kind and intelligent human being. She has all of her fingers and toes. Howver, on her left hand she has an underdeveloped pinky (which was fused with a “string”), ring finger only to the first joint. Her right hand she has her middle and ring finger to the first joint. Both shins and calves had deep bands, which were released with surgery. Her right foot is a club foot and her left has her big toe and middle toe only to the first joint.
Thank you for offering this sight. It is good to see other people whose lives were impacted by ABS. My daughter struggles with “being different”, but I tell her all the time that she was born the way she was supposed to be and that everyone has something different with hem. You just can’t always see the differences.
after joining the ABS group on fb and reading all these stories….ABS doesn’t seem to be so rare as I was told in the hospital by doctors. What I don’t understand is why the cause of this ABS is still unknown…can this be prevented? why does the inner lining of the sac tears…?Is it something because a mother did during her pregnancy..?
My baby girl was born one year ago and till the day we first saw her we had no idea about this condition of her right hand. We were shocked and sad, I was crying all the time but now i regret i lost all this time trying to understand what went wrong.Now i am a happy mother of this angel who uses both her hands equally and shows me that she is able to do anything.
Hi, My name is Naura. My Daughter’s name is Amanda and she was born in 1997, she is 17 yrs old now. Just like you we didn’t know about Amanda missing her fore arm on her left hand from the elbow down. I cried and went through so many emotions. Wondering what went wrong. Was it my fault. Then, I started thinking how were she going to do all sorts of things that people with 2 hands do. And to my surprise she does everything and sometimes even better than people with 2 hands. She is in a basketball team in High school and does well. Enjoy your baby because everything does work out.
Sorry to hear about your daughter. I was born with a stump of a left hand with no fingers. My mother always told me that it was a result of the umbilical cord wrapping around my hand. Only recently did I find the “real” reason. I am now 68 years old and had, what I consider, a normal life. I played football and track through college ( no guitar or violin lessons). One thing she will experience is curiosity from people, especially from kids. My grandkids always ask me what happened to my hand.
Hi All…Thanks a ton to all of you who have posted their stories and comments…..My daughter Aahana who is now 18 Months was born with ABS afffecting her right hand fingers and toes ………….I heard this term ABS for the first time in my life after she was born….we were not told anything during ultrasounds may be they didnt see it………..i had never seen ABS cases around me in my entire life until my own daughter had it………..i was so disappointed to learn that even doctors didn’t have any idea why it happens and how it is caused…… I still just keep blaming myself and try to think over nad over again on what things did I do wrong during pregnancy……I just pray to God to give my daughter the greatest strength to accept and love herself the way she is ……
http://enablingthefuture.org/
This site consists of hundreds of volunteers around the world that are using 3d printers to make prosthetic hands at no cost to the recipients. This site is worth checking out, and if interested, filling-out an intake form, to get started.
Please know that the well meaning volunteers at enablingthefuture do not custom fit, nor use medically appropriate material such as thermoplastic nor stainless steel hardware in the construction of their devices. This results in unhygienic, unsafe and poor functionality. Mr Crape is correct, they are free.
Please be careful with our little loves, lucky fins!
Prior to the article in the Parade I had never heard of ABS. I was born in 1958 and many assumed that the deformity of my left hand was from thalidomide. It was not!!! The current technology is wonderful! I hated my prosthetic “hook” as a young child and never cared to wear anything after several years of PT! To all the parents of ABS kids…let your kids try everything… be understanding….support them…treat them like every other child and they will succeed!
My son Mekhi was born in April of 2008 with amniotic band syndrome that effected his left had he has 5 small numbs for finger but the good part is he has a wrist joint my son doesn’t let that stop him he is very good on the computer and with hand held video game and he work wonders with a Nintendo wii remote with the Nuc chuck
I never even heard about amniotic band syndrome until March 18, 2014 the day my daughter was born, Pomona ca. I had 4 ultrasound but it was never detected, i found out the day i gave birth.No one wanted to tell me anything. Not the doctor or nurses. I just herd them talking about her hand, i had to sit up while getting stitched up to see what was going on. From that moment it all went blank i cried and cried and just wanted to hold her. Her wrist and hand are missing but i love her just the way she is shes perfect. She has truly changed me and i thank god that shes mine. Im a single mommy so im the only person shes inlove with. I truly wouldnt change her for anything. Doctors never gave me good info her pediatrician said theres nothing we could do since shes to little until shes five years old. I really want more info for example what doctors should she be seeing, what can i do to help etc.
My daughter Laura was born 41 years ago without her little pinkie fingers on both of her hands but with ten toes. I have never heard of ABS until today. Laura’s hands are perfect,no stubs or anything just missing fingers. If I didn’t tell you about it you would never of noticed because her hands are perfect the way they are. My son was born with ten fingers and toes and all three of Laura’s children have ten fingers and toes. I had a great pregnancy and delivered her within six hours. If there is anyone else out there with the same condition I would love to communicate with you because all of these years I have never met anyone with hands like my daughter.
I am a 68 year old male who was born with the above handicap. I was told that the umbilical cord wrapped around my hand which stunted the development of the left hand, which is incorrect. I saw an article in the parade magazine supplement of the Philadelphia inquirer about a 10 year old girl who has this condition and was fitted with a prosthetics developed by using 3D image technology. Now I know what caused my handicap.
I am so thankful to have stumbled upon this website. Until two days ago I had never heard of ABS. I was born in 1965 and have no fingers on my right hand. I was taken to the Child Amputee and Prosthetic
Project at UCLA from the time I was five months old until I was 18. After I “graduated” from the program I still remember them telling me, “we really have no idea why you were born like this.” Now I know why. I was immediately taken from my mother as soon as I was born. They didn’t even let her see me. After running tests and doing an exam they came back and told her. She began reading about all the things I would never be able to do. Growing up it was not about the things I couldn’t do, it was about finding a different way to do them. I was fortunate in the fact that I grew up with the same friends from Kindergarten thru high school. To them, having a friend with one hand was “normal”. The times I struggled were when I would have to go to a new place where no one knew me because I hated it when people stared. I would much rather have someone ask me what happened than just walk by and stare. I am now almost fifty years old and have been a Kindergarten teacher for twenty six years. On the first day of school every year I sit down and show my class my hand, let them ask questions and touch it if they want. After that I never have a problem with them being afraid. I’m hoping that each child that comes through my class will remember how normal I am, even without fingers, and that they will never see others with differences as weird or to be feared. The Lord blessed me with one full set of fingers, it could have been much worse. Yes, I still feel insecure in unfamiliar places meeting new people but then I remember how blessed I am as a human being. It’s just amazing that after all this time I finally know what happened.
You sound a lovely person, its good the job you do in the Kindergarten showing the new young children will make them grow up not being hurtful to others. You make the world a better place!! I bet your Mum felt like me when you were whisked away the moment you were born, that also stays with you, thank goodness times have changed.
I have an 8 year old son, even thought he doesn’t tell me, I know he is nervous when he has to meet knew people, is not because he is not comfortable with his body is just like you said is the staring part that he doesn’t like, he does not mind talking about it at all if they ask. I hope that he continues to be a great person like yourself.
My son Mason was born with three of his fingers missing on his right hand. Leaving him with his thumb and pointer finger. Oh my gosh, it worries me so much on how he will grow up and if he will be made fun of, if my baby will be happy. I love him so much, he’s eight months old as we speak and I wouldn’t trade him for anything. I just always want to be there for him and love him. It’s good to hear other people’s stories. It gives me peace of mind. Thank you 🙂
Hi there. I have just found out my baby girl 20 weeks pregnant is missing g her ring finger and pinky of her right hand. It was such a big shock and I didn’t think I could move on with this pregnancy. Thank you for your post. It’s helped me a lot. Very happy to Hear how you feel about your baby now. I guess we will always worry but I think we will also be pleasantly surprised.
Hello, i am a mother of 3 years old girl born with ABS. She has three missing fingers (2nd, 3th and 4th) at her left hand. The other fingers at this hand are one phalanx smaller than normal. The right hand is normal. The toes are all normal. Only her left hand. I didn’t know anything abot this, before read this site (i found it today, accidentally). She can grab with her left hand.
We had an appointment with one profersor in Vienna, Austria. But he gave us only option for pulling her two existing fingers- to become with normal length. He said that the phalanxes are in the balm.
We have X-rays of her left hand, on which is shown that there are three bones for the missing three fingers in the balm.
She has space between her first and fifth finger.
We are wondering about some kind of prothesis for the missing fingers……
But I am afraid…
Hey, I was born with abs on left hand too. I am missing most of my middle finger and ring finger. My parents never treated me as different, which was best. If I could, I don’t think I would change it. I think its made me more empathetic. So don’t worry too much about your little girl. You have to weigh the benefits of surgery against the benefits of no surgery.
But you asked about prosthesis. My index finger curves in some on my left hand because there was no middle digits for it to lie straight against. My mom once mentioned in passing that if they would have realized it, they might have put something there to encourage the index finger to grow straight. But no one thought of it. Because it just wasn’t that big of a deal. And I think that was for the best. In the grand scheme of my life, that curvature hasn’t mattered one whit. And if my parents would have focused more on making it physically perfect as they could, I think it would have made me feel more like there was something wrong with me. I adapted to compensate anyway. Kids are resilient.
I am so pleased to have accidentally found this website, I gave birth to a beautiful baby in 1972, with his right hand fingers not formed correctly, no one has ever mentioned this abs, I knew something had constricted the growth of his fingers as I could piddle it off and I saved it to show the doctor, my husband and I have always blamed a d and c I had after a miscarriage, thinking ‘something’ must have been left inside me!!
Back then it was like the dark ages, babies were kept in a nursery only to be seen at feed times, after he was born no one explained anything, they covered his hands when they bought him to me, my local doctor examined him thoroughly as I thought all sorts would be wrong with him, not just his fingers, you could only see your husband for half hour visiting per day, it was a most awful time, so worrying, I can still remember vividly the nightmare i had that first night of his life I woke distraught and I just needed to hold him and tell him I loved him, I was pacing outside the nursery, not allowed to go in through that big blue door, the night nurse telling me off to get back in bed, I would ignore her if I had that time again!! I was desperate for morning just to see him and cuddle him.
On his fourth day we took him to the hand specialist, the consultants all took photos and made a fuss, then he was admitted to hospital on his sixth day for an operation to take the bubble thing off, no childrens hospital then, parents couldn’t stay, it was awful leaving him on his own, a little baby in a big cot left all alone, I am writing this through tears even now forty two years later, he had a few operations during his childhood, which he coped well with, he has grown into a wonderful man, so caring, marrying young and having his own family, always a hard worker, a good provider, very sociable, we are really proud of him, he had the taunts, he has managed everything, nothing has stopped him doing anything, I thank the Lord I had him and he is who he is.
To all you new parents who have just had this shock, you will cope, the baby will have inner strengths, as you will too, you will get through this, I wish I had discovered this website sooner, and that I could chat to someone to help me instead of it being ‘brushed under the carpet’.
Would someone share what type of 504 Accommodations has their kid with ABS received? I am an academic Coach working with a child I believe should request accommodations. He is missing fingers on both hands and he has clubbed feet. Thank you, Coach
Hi everybody, I’m Jan and I’m 57. I was born w/ABS. My first surgery was when I was born.My left foot had floppy webbed toes so they cut them off.So I’ve never had any toes on the left.My right foot has two nubs for the 2nd and third toes. I learned to walk just like other kids and never used or needed any braces.It’s only now in later life I’m having some walking issues. My left hand is like my right foot,Lhave thumb,index,two nubs,a pinky. Right hand is like my left foot. I have a thumb,partial index,and the rest are like fused together. No limits when I was a kid (we didn’t talk about my issues) I did everything all the other kids did.Thanks to Shriners hospital. It’s way more common now to see physical challanges with kids.In my day I was the odd one…but never teased or made fun of. I was always pretty popular and sometimes the class project for getting letters while I was in hospital. I stayed for months at a time and only saw my family on Sunday’s for a couple of hours.I loved all my caretakers they were AWESOME. I didn’t come from a family of hugs,kisses,and never was told I was loved.So getting hugs when in the hospital was my second family. I would love to hear from other old folks well and everyone else to hear your stories or answer questions.
dear jan keller it is so wonderful to hear from someone who i seem to have such a common likeness too.iam 55 yo i was born with abs as you were back when noone knew what it was.i have missing toes on both feet my fingers are nubs on the right and i have a useful thumb and index finger on the left.i gerw up much like you in that my first surgery was at birth and several followed.i was never made fun of in school that i can remember but it seems now days is more difficult.iam blessed i walk fine and am a nurse.i would love to talk with you some time if youwould like.please reply and god bless.lisa vancamp
I am 75 yrs old and was born with ABS.I discovered abs 10yrs ago having met a young lady who had the same and had researched and found out about abs.Both my hands are affected having stubbies and right hand does not open fully.My feet were also affected having short toes and right foot was clubbed .I never had any surgery but learned to deal with it and have a successful working life, marriage and four normal great kids. I was always treated the same as other people and found the teenage years were sometimes hard most people treated me good had lots of friends and life was good.I am having a little trouble now with arthritis in my hands but generally manage just fine. I think having abs has made me a strong person and i can deal with adversity and am thankful for what I have.
So good to hear from you Joyce. You are officially the eldest of abs people I heard about. I’m curious to know how your parents handled your abs. Do you have siblings, if so how did they treat you? I’m always so interested in the upbringing of other abs people. Especially from us older abs people when “disabilities” weren’t as visually seen as nowadays. Your right about being strong. That is definately a word people would use to describe me. Also I’m very adaptable to situations. Once again, great to be able to chat with you. Jan Keller
Jan, I had two sisters and a brother,they treated me the same as each other,It was never an issue that I was different.My Mom always blamed herself for my condition and unfortunately she passed away and never knew that it was ABs.Dad was somewhat overprotective of me .My grandkids were very curious when they were little but I handle it as a matter of “it is what it is ” so they often joke about the way I do things and we have a good laugh .Nice to share my thoughts with you.
Thank you for your informative and kind website!
I am a home visiting nurse for first time moms and have a client who had a baby with Amniotic Band Syndrome. I am wondering how to best be supportive of this new family and would love your input as to what would be sensitive, helpful and supportive during this time and as the baby develops. I would appreciate your response if anyone is able to give me some ideas. Thank you so very much. monteluz.marina@gmail.com
Hello just wanted to share that our amazing 10 year old son Ewan who had 2 damaged fingers and a clubbed left foot (we are lucky enough to be his adoptive parents), has won the Gold medal in the N.E. Derbyshire inter school athletic championships. He came first in 600m sprint. Long jump and Javelin.
He couldn’t be any prouder of himself … And we are bursting with pride too.
Stay positive guys. These little people are amazing xxx
My baby was born missing 2 toes on her left foot in April 2014, and the doctors believe it could have been her position in the womb. I do not yet have a diagnosis for her, but I believe ABS may have likely been the cause. Compared to what I have read, her case seems very mild and if this is the cause I believe she is very lucky to have three of her toes including her big toe for balance. Her left foot is also smaller than the other, however at 9 weeks old, she has already locked her legs in order to ‘stand’ with assistance and my instinct tells me she will be fine.
The ultrasound did not pick up on her condition so the hardest part was finding out after she was born that she was missing two toes. After birth, I heard the nurse mention that I should count her fingers and toes because I think she was trying to get me to notice for myself, but I didn’t notice at all. I think back on that, and I think “If I didn’t notice this in my baby right away, nobody else will either!” Eventually the nurse gently told me that she was missing her two toes and I was in shock because it was so unexpected. I thought it was a joke because I just could not believe something was wrong. It was very hard to tell my husband, we were both in shock. However, our baby is so incredibly beautiful and has such a great personality coming through (and REALLY, she is amazing!) that I think that has made it easier to deal with overall!
I have since felt very sad about it only twice because I know that she is the one who is going to have to deal with this challenge and it will be harder for her if I don’t stay strong. I had a moment a few days after her birth where I asked “why does it have to be my baby to suffer from this?” And another time, I had struggled with how to tell friends and people in my family. My husband and I decided the best way would be to break the awkwardness of people finding out with a joke, and not to try and hide her foot, so we decided to say she just has to grow two new toes and her socks will fit just fine. I have used this a few times, and people have actually asked me if she will grow new toes. I think the best way to deal with it is humour! I like the previous post near the beginning of this guest book where someone told their child to tell people a crocodile bit their foot (?) off. Might use that later, thanks!
I am so glad that I bumped into this website. My daughter was born on May 23rd 1997. She was born missing her hand from the elbow down. Back then doctors didn’t have an answer as to why my daughter was born missing her arm. I had all kinds of questions. I was confused. I was hurt that my baby girl was not complete. I searched and searched for answers and I found out about Amniotic Band Syndrome.
My son Callum was born in September of 2002 he was born with both his arms missing from the shoulder. I was told that ABS was the cause of this but was also told it was very uncommon for it to happen on both sides of the body. He is now 11 years old and is an inspiration to me as he has learnt to do things with his feet and mouth I have learnt with him. Reading your stories has made me realise that there are so many more people out there that have this syndrome than I was aware of. You are all superstars 🙂
Born in 1963, left foot no toes, looks like 1/2 a foot. Today found this site, now understanding what the doctors at St. Luke Hospital in Northern Kentucky meant by “my cord was wrapped around my foot”. My foot is same as the other from where it stopped back. No surgeries, walked at normal timeline, can do anything but wear high heels (pumps). I was the baby of 5 in a Catholic family and we belonged to the local pool. So yes, being different caused the stares, whispers and questions of children and adults alike. I am sure that my family wanted and could have understandably spoken for me or even scooped me up and off to “safety”. Reflecting back, I appreciate that they not only thought of me as normal-they allowed me to accept myself as normal. My heart goes out to all, you and your children will be in my prayers. My Momma taught me that no one is perfect. Everyone has something wrong-just some you see and some you don’t. Sometimes the thing that is wrong is the inability to show compassion, and I believe that in my case my difference (my normal) caused my family-and my own children to be empathetic human beings. I will add that you as parents will have the grandest effect on how your child will view themselves and the world as it relates to them. You have been entrusted with an honor not all in a lifetime would be granted. The sun will shine and you will find your way…many smiles and laughter await you and your little one. A great song to google is “Wonder” by Natalie Merchant. This tune has always spoken to my heart.
My son Mason was born Jan. 2014. He was affected by ABS. I had no idea throughout my whole pregnancy. We had a scheduled C-Section, after Mason was born, I asked my husband to check on him and make sure he was okay. He came back and told me he was missing three of his fingers on his right hand, he was missing his toes as well on his right foot, and he had his foot outwards(Congenital Vertical Tallus). My heart just dropped and I just started crying and kept thinking what I did wrong. Once I seen him in the recovery room, I told him that I love him and everything will be okay. Mason is four months old now and he has had two surgeries. He is a very handsome little boy. I love him so much.
I gave birth to our second child,a beautiful baby girl on December 13, 2012. To our shock though we saw somthing was wrong. I had her by c-section, they showed me her right hand. Which looked like she was missing last 2 knuckles on her hand besides her thumb. And they were webbed together. I cried, not with tears of joy like I did with our first daughter, but with tears of sadness for her. I thought, “hat had I done that hurt my baby”? After spending 3 hours in recovery( because the nurse decided to go on break) I finally went to my room. But only my husband was there waiting for me. He said he had to tell me somthing before I see our daughter. It wasn’t just her hand that was effected but also her left foot. She had a clubbed foot and some of her toes were shorter than they should be. I cried again. And hole my husband tried to comfort me they brought her in to me. She was so beautiful and so peaceful. We were stuck with the anxiety that our daughter has a disability that we knew nothing about. Even some of the doctors knew nothing about it. She was put in a cast at 3 weeks. And had surgery at 3 months. Which killed us.:( she wears special bar shoes at night. And she’ll continue to do so until she’s 4. But we look at her and realize we are so fortunate it wasn’t worse. She’s running around like nothing’s wrong and she has Gil function of her hand, though sometimes it’s hard for her to grab things. She has another surety coming up, which I hate think about. But she’s happy and healthy.
I was born in 1980 with missing diigits at the right hand and missing some toes. I didn’t know what i had nor my parents ever talked to me about it. I discovered what i had only my googling and then going with my husband to a genetic centre where they confirmed my mother and i had ABS syndrome. I don’t know what cauaed the syndrome as my mother doesn’t remember it. I just know she was loosing amniotic fluid from the 5th month on and had to stay in bed but at that time she never did an ecography so she didn’t know what was going on until i was born. I stil sometimes feel angry and ashamed about my conditions but with the help of God i did everything i could do in life and soon i will become a mother. I hope and pray my baby girl will be fine and she won’t have to be what i suffered during my life. I can certainly say life is not easy for a person born with ABs and we have twice the stress of a normal person but we are fighters and we love life and still feel lucky for the life we received.
I was born in 1961 with bands on my right hand being born a month premature saved me from loosing my 2 middle fingers and thumb I had surgery to replace veins .I was told it was the first ever attempt at this kind of surgery . was told surgeons name was Doctor slaughter . was also told My surgery was in the medical history books
My second daughter was born with ABS on January 11, 2012. We didn’t find out until she was born. All four limbs were affected. Her toes on her left foot are webbed and she has no toes on her right foot. To this day she has no problem walking or running. Three fingers on her left hand were amputated at the finger tip. All her fingers on her right hand were affected with one amputation. She has gone through one surgery on her right hand to reduce the appearance of the bands on thee fingers that were close to be amputated. At two years old she has had no difficulties at grasping anything. She’s a happy two year old
Hi everyone i was just reading through all the comments on here and have found everyone to be extremely inspirational. I am 27 weeks pregnant and at my 20 week scan found out that my little girl has got abs affecting her right lower leg and foot i have not had any options discussed with me as to what may happen when she’s born as im still waiting to go back for another consultation. I was just wondering if anyone has had their children or even them selves affected by abs in this area and what advice they could offer. Thank you very much
My son has a friend whose hands are affected by ABS. They are 9 now and have been together since 4 yr olds at daycare. He told me today what it was called – my 9 year old told ME about ABS! All the kids in the class know and understand. His friend is undergoing another surgery and they are all just so caring and worried about him. His friend plays soccer, is outgoing and a great little guy. I’m so proud of him for being able to tell his friends – and for them, especially my son, to just accept it and educate others. I found this site and think it’s a great resource. Well done!
My son was born in 1986 with ABS. His fingers on his left hand were basically just small stumps. Back then they knew very little about ABS. Was he made fun of in school? Yes, he was. But he told the kids his fingers were bitten off by a crocodile! It wasn’t easy for him, but I believe it ultimately made him the man he is today. He finds a way to do anything a fully two-handed person can do. He is now an air traffic controller. I am very proud of him.
My baby girl was born 5 weeks premature throughout my pregnancy i had many complications but found out in the last 3 weeks that her right hand was folded inward but that everything else was fine! They did an emergency cesarean and we found out she has ABS Took her ring finger on right hand and her wrist on right was affected causing it to curve inward and her left had has no middle finger and caught the tips of 2 other fingers! I thank god for sending her to us we tried for 8years to have a baby but it was a shock to have to deal with this after everything else! I know she is going to have a normal life but it scares me to think she is going to be teased or maybe bullied her whole life! I feel like it is my fault even though the drs say there is nothing i could have done to prevent it from happening. It gives me hope to see so many of you affected by this are so strong and able to do so many things and arent limited. I hope my husband and i can install that into my baby girl as she grows up and make sure she is very confident and not self concious about her hands!
Hey Bridget, our adopted son was born with 2 damaged fingers (one very oddly shaped and half his ring finger is missing), he also has a clubbed foot. He is 10 now and runs dross country for the school and cricket for the county. He does get some stick at school but it’s not about his fingers, it’s because he is so very, very competive and has to win at everything!!! He copes brilliantly. Don’t let fear steal the joy around your new daughter, she will amaze you I am sure.
Thank you annie! I am thankful for your advice. Its been a little difficult to deal with all the comments and starring that we have been getting even from COMPLETE STRANGERS! Very tiresome to have to keep explaining aswell ! I feel now more confident after reading your reply to my post. I know my daughter will do well, even at such a young age and being premature she is amazing us and our pediatrician and this is just the beginning! To me its been frustrating having to deal with ignorance from grown adults and believe me i have had to restrain myself from going off on some. I am so glad that there are sites like these where we are able to confide and get help from people that understand and are going through the similuar situations as us! Once again thank you and i cant wait to see what my baby girl surprises us with next seeing as that she is just full of them!
hi im brittany i was born early in jan of 1989 i was born without 5 of my fingers and one they saved i can do everything that anyone else can do i just do it differently my doctor said i could get fake fingers but i thought why try to get use to fake fingers when ive been without fingers my entire life . ive also had cancer it affected the right side of face ive had 5 surgeries but i know im unique
I was born with ABS. I’m 16 years old. Throughout my life, I’ve had over 50 surgeries in reconstructing. ABS caused effect in my fingers, toes, and a cleft palate. I still have minor surgeries, but I’m blessed to even be alive today. I’ve been to many, many doctors and my surgeries have become a huge part of my life. Now a Junior in High School, I’m basically finished and my transformation has been incredible. I will always have differences with my hands, eyes, and toes, but I could never thank my doctors or family enough for being so amazing through my journey. I’m still a normal girl. I live a normal life, and it’s great.
My daughter was born with abs and is doing perfectly fine. She is my angel and she teaches me how to stay humble.
Thank you for this site. Thank you thank you thank you. Received the news yesterday at my 20 week ultrasound our second little baby boy is missing a portion of his arm from the elbow down. I am in shock, I have not stopped crying as I have to go for more check ups to check for anything else (everything else looks great full other arm including fingers! Spine was great and head.) I now have a positive look out for his future and I thank all of you. All the stories, positivity and hope. God bless. Please feel free to message me. I truly need some friends on this one. Much love.
Hi Erika, I want to say that it takes a loving and caring person to even begin discussingur situation,…you are preparing that beautiful child you are about to give life to.I’m 53 years old and was born with Abs and didn’t know about the term until my second child so I thought it was Some taboo or curse,.I later found out that there were others l like me.born at 22 oz in the 1960’s children like me would surely face doom.But I didn’t thanks to my Grandmother, she was my true advocate in life.The amniotic bands claimed three fingers on the right hand and three on my right foot, my index and middle finger are fused( syndactly ).and the true test for my family was that I was also born without an abdominal wall ( omphalecele)And after all these years never knew of any support groups, God will give you strength, always ask how hours or her day was tell them every thing always be truthful. Bless You
Everything will be ok. Just stay strong, u can always email me if u need a person to talk to, charrobby@gmail.com, my daughter has no fingers nd limited legs use. I kno how u feel, i was very scared at first. She is now 4 years old nd is doing great. U will be suprised at how strong your child will be.
My son is 5 months old and he was born with abs his little finger and ring finger on his left hand are shorter than his other fingers, I’m only 18 and as a first time mum i’m still struggling to accept it because i don’t want kids to pick on him as he grows up and it’s very upsetting i’m from the UK and don’t know anyone that has children that has abs so i feel like i have no one to talk to and i feel like no one understands 🙁 If anyone from the UK has children from the UK that suffer this feel free to message me larajaiexo@icloud.com
I gave birth to my daughter Martha 21yrs ago, she is an amputee and had both her hands web together. She is going to college and starts going to the University for prosthetics and occupational therapy, she states she is doing it because it is so close to her heart.
hi my name is lisa, iam 54 years old a registered nurse and have ABS.iam probably one of the oldest people on this site but am so touched by the stories i have read.i am missing fingers and toes on both hands and feet.they said i would never walk but i walked at 10 months.i write and as i said i am a nurse.please know that life in any form is a blessing and ABS children can live full and productive lives and it would be my pleasure to help and support any of you reading this in any way.god bless all of you.
Hello Lisa, i read your story with interest. I am trying to collect infiormation about ABS impacting the feet and toes. When a toddler is born with very tiny toes on one foot (almost not noticeable for 3 of them, a 2 hyper tiny) and club foot, I understand you can use the Ponseti method to first adjust the direction of the foot, but then how do the foot and the minitoes grow with time ?
You mention that you are missing all toes. May I ask if the rest of your feet grew normally overtime ? Or did you have to use some kind of protesthesis to be able to walk ?
Thank you again for sharing.
hi valerie im so glad to hear that you are interested in my story.i must start by saying im sorry you are having to deal with abs but know that we are strong people and determined to live as normallly as we can. i was luckey in that i did not have the clubbed feet that usually comes with abs,i simply dont have any toes and both hands are missing fingers.my feet and hands grew normally as i grew but the constriction bands made the skin very tight and it took 9 surgeries to correct that.im a nurse , i run as often as i can and would rather walk than any thing else i think because the docs said i never would.there are so many advances in the care today and docs know what this is but it takes a site like this and a good support system to help us through.dont get discuraged and remember if you need to talk im here. thanks and god bless
Hi, my 26months old boy has abs that effected the last three fingers in his right hand. We’re planning to do some surgeries in the future because that’s what the Drs recommended. He is doing great though and has a big personality. I’m very glad that I found this site because I’m thinking about having another child and very scared that he or she also have abs and it may be even worse the next time. Please advise me on what to do.
Thank you!
Tamara, ABS isn’t genetic. You don’t have to worry about future pregnancies. Evan’s brother Elliot didn’t have ABS.
Hi, Tamara
Hopefully, you already have another baby by now! Thought I’d let you know that I’m the oldest of 5 girls and none of my younger sisters has had any sign of ABS. Nor have any cousins, nieces, nephews, or even my own four beautiful children! It’s just a random, and gladly rare, condition!
Love that baby and always tell him he’s special! He’ll be AMAZING!
my son was born missing half a finger and the bands are on the same hand around his wrist he also has no foot an the foot on the other leg is missing the big toe he was never been teased he has two older brothers they all went to the same schools which helped he wears a prosthetic on the leg that has no foot hes 18yrs old now an i love bubba hes my world.
my son Jim was born Nov. 7, 1963, he only had 4 toes on one foot and was club footed, he had surgery to stop the growth in one side so he would be more even in height, he wears like an 8 1/2 shoe on one side and 10 on the other, he had had a successful life and works hard and it has never kept him from doing what he wants. When he was teased I would always tell him that some kids had no feet, He had care thru the Shriners in KC at KU, there was no name for it then. The Dr. just told me the cord got around his foot and kept it from growing. It has not kept him from doing anything.
My son Benjamin was born 12-24-08 he was born with abs his right foot was clubfoot also had band on the leg he had two short finger on right had and the band wrap two finger on left side on also on left foot he had band wrap around big to it he lost toe on right foot because he got inflation’s but better 4 year old soon be 5 I thank god he better.
This website is awesome! I was born with ABS 39 years ago. Back then I don’t think they had a name for it, I just learned it a few years back.
ABS affected both hands and my feet. I was born clubfooted and only about 10% of the feeling in my left foot. My parents told me that it took awhile for me to learn to walk, but after that there was no slowing me down. I was born into a “sport” family. Everyone played sports. I was no different, just did things differently. I played almost every sport a kid growing up in America can. We moved to Texas when I was 6 and I fell in love with football. By the time I was in 8th grade I had broke our high school field goal record and was one of the leading running backs in our district. My freshman year I was the first freshman to play first string on varsity team. I was in the top 5 in the state for kickoff touchbacks and net punt yards. I was #1 in the state for field goal percentage. I did all this cause my parents always told me “you can do anything you want to, and the things you can’t do, at least you tried first”. I spent many years trying to find things I couldn’t do. One of the hardest things for me to learn to do was bow hunt. Now I have gotten really good with a bow and love it. I go hunting with my bow all the time.
For you younger people with brothers or sisters or even yourselves that were born with ABS, limitations start in the mind and don’t use the word “can’t”. When people would make fun of me, I came up with better jokes then them. Be open to questions about what happened to you, even make up a few stories to kinda break the ice a bit. I tell people that I was attacked by hogs and that I dropped the phone into a blender while making a milkshake. It will be tough at times, but you need to be tougher.
Anyways, thats my story and love the site. Everyone of us are special, how special do you wanna be? Its up to us and our families.
Hello to all! My name is Morgan and Im 21 years old. I was born with ABS and it affects all four of my limbs. Ive been doing some personal research and I can’t seem to find an awareness week or awareness ribbon dedicated to ABS. I was hoping that someone could inform me as to if we have one. Hope everyone has a wonderful day!
My little brother has Amniotic Band Syndrome we were lucky he survived but he gets picked on a lot – he is only in pre-k. ABS affected his left hand (but thank goodness that’s all it affected) He feels really self-conscience about his hand he can’t grab things or pick up anything with that hand. He feels like he’s the only one who has it but it’s kinda hard to prove that he’s not. No mater how much I prove that to him he always feels bad about his hand. I can tell he’s going to do something great when he grows up. I love him so much. He is so strong and sweet.
Hi Alexis. You sound like a lovely sister.
I am 49 and, like your brother, have a left hand affected by ABS. May I suggest a couple of things?
The first is that you tell your brother his hand makes him special. Point out that everyone else has hands like you do but that his hand is different and therefore very special. My grandmother secretly told me this when I was a child (secretly because my parents didn’t like to discuss my hand) and it helped a lot. Your brother may not believe it or take it on board at first but gently mention it from time to time in a matter-of-fact way and he’ll begin to believe it. Children at his age are very susceptible to what the people around them say and think and this is a way to give him a positive view of what others may see as something that’s “wrong” with him. Now is the time to build him up for what lies ahead of him.
The second thing is that you help him work out what to say so he can respond confidently when people look at his hand or comment on it. This is very empowering. It’s something I wish someone had done for me when I was young. Start by trying to get him to open up to you about what people say to him and, most importantly, how he feels when he sees them looking or when they make a comment. Then help him work out some things he could say and do in response. Brainstorm some ideas together. Make it fun for him by suggesting some silly ideas so you can have a laugh about it together. Then practise the responses by role playing. The ideal is that he develops the ability to smile and respond cheerfully when someone asks what happened to his hand.
I hope you don’t mind me making these suggestions. Everyone’s different but I know these things would have helped me.
Blessings to you and your brother. he’s lucky to have you.
Felicity
Hey Alexis, Felicity is right in saying you are a great sister and her advice is perfect.
I also grew up with ABS missing my left hand. I am now 45 years old and have accomplished many things throughout my life. I remember when I was 4 years old and thought that I would never be able to tie my shoe laces like the other kids, but my Dad took some tape and taped his own left hand up so he could find a way to teach me to tie my own laces. I learned to tie my laces and even showed some other kids how to tie their laces. Since then I have played hockey, baseball, ride bicycle, ride motorbike, drive truck, worked at a mining company and for the past 17 years work as a Registered Nurse. People will always stare, still do, but always tell your brother that he is special, he has a gift, be proud, stand tall, keep smiling and he is never alone. He will find his own way of doing things, it will be amazing and other people will be amazed by what he can do, but never give up trying.
When I was growing up, I would tell people “That’s the way God made me” and people would understand. I always thought about a Prosthetic hand, but I realized that it would only confuse me, because you don’t miss what you never had and there is always more than one way to do things. My Dad always told me that “If there’s a will, then there is a way”. So as long as your brother has people like you in his life, there will never be a stream too wide or a mountain too high. We do have a disability, but we are NOT disabled.
Take care
Pat
Hi, Alexis,
I love that you mentioned his LUCK! For a youngster, that’s a great way to look at the situation!
My name is Wendy, I am 48 years old and I am a teacher. I lost my left index and middle fingers to ABS. I remember 5 years old being rough for me. Other kids began to notice that I was different, and some were not very nice. But I always knew that in my family, I was loved and appreciated. My parents never sheltered me, but were very good to explain in 5-year-old language what ignorance and curiosity were. They helped me understand what the other kids were thinking and feeling. They taught me how to explain to the other kids that I was not “broken” or weak, and they instilled in me the belief that I could do ANYTHING I set my mind to!
Although most of my career has been spent with high school kids, I had the chance to work with kindergarten kids for about 3 years. They were by far my most curious students. I eased their concerns by talking to them about “finding Nemo” and his lucky fin! I explained to them why his daddy called it a lucky fin, and encouraged them to each give me a “high five” with my “lucky hand”! It showed them that the difference wasn’t to be feared or hidden, and soon, most of them completely forgot that I was different. For the first few years of school, it might not be a bad idea to talk to your son’s teachers to see if a similar chat with his classmates might help him be accepted. Answering their questions rather than ignoring them is, I believe, a good idea. You can even let them ask question when they’re all together. Some will wonder if it hurts, some will ask if the fingers are going to grow back. Some might even ask if they can touch. When given the chance to ask in an honest and open way, kids will often surprise you with how genuine they can be. Riley will likely look to you for support during the questions, but I honestly believe the results will leave him feeling accepted and less anxious about his differences.
Hi Alexis,
I would like to know how your little brother is doing? Is he able to grab things now?
My name is Tyhanna Esham. I have been a hand therapist in Atlanta Georgia for over 10 years. I am working to start a Robohand Clinic here in the US and found your sweet website on the Makerbot robohand page.
I invite you to see my indiegogo site here, I think it does a good job of explaining my vision.
http://www.indiegogo.com/projects/robohand-usa-clinc/x/4263398
Hi there 🙂
i just want to say hello to ya all. That little boy on you website (Robohand 3d video) is my little boy Liam Herman, he was born with abs on his right hand. He is my get up and go my reason for living.
My little girl is also missing the same portion of her left arm. She is almost two now. I was very worried and sad at first. In the past two years I have met so many amazing people because of this and my daughter has no trouble keeping up with her 5 year old brother. It really helped me to see other kids like her that were older so I knew it would be ok. You are welcome to contact me. There are also many great websites for our kids. They even host picnics so they can meet up. Lucky Fin Project, Born Just Right and My Special Hand are just a few. My email address is turtlejrf@aol.com
I was born in Michigan in 1993, not very many people heard of ABS or had any information about it. Very much a struggle living with ABS and having no information about it. It has affected both of my ring fingers, right foot and i have cleft palate. Ive never gotten to share much about my ABS with others because ive always felt so different and tried to hide it. I do my best to hide it in public because of the stares and just how society thinks we shoud all look these days. This site really helps and i will continue to open up more and share my story to educate people about ABS.
My daughter, Michelle, was born September 2004 with her left fingers missing. We were shocked when we found out after she was born. I thought I had done something wrong although her doctor assured me it wasn’t anything we could’ve prevented. She just turned 9 years old and is healthy, outgoing and independent girl. She has often asked why this happened to her or if her fingers will grow. I explain to her that she is special and God has made her this way for a reason. We never treated her different than our son who has all ten fingers. At times she is more independent than he is. She doesn’t let this stop her from trying anything. She loves sports and has played soccer for 5 years. She is also learning the trumpet this year. I haven’t looked online for any resources for her because she’s been so great at everything she tries to accomplish. She taught herself how to put her hair in a ponytail and she’s getting better at tying her shoelaces. She’s been dressing herself since she was 2 years old. I’m very proud of her! She makes me want to do better myself.
My little girl was born 6 weeks ago missing her left arm from just below her elbow. We have had no official diagnosis yet as there’s a lot of routine tests to be done, though her doctors are fairly confident this is what she has. This entire time I’ve not read up on abs, I was terrified that her being born like that was my fault. Tonight I finally got enough courage to look it up and this is the first site I’ve been to, I have to say its been so encouraging! My little one is so beautiful and these stories just give me so much hope for her future! Thanks so much!
My name is Betrice, My son Sean was born with ABS. He is now 21 years old. I am so proud of him. He has learned to educate people about ABS.
Jason you couldn’t have said that better. I’m 38 years old and have thrived in life without my right hand. My parents made no concessions for me, so I have never felt in any way disabled, as I have never been treated differently. I now have three beautiful children of my own – we snow ski, water ski, ride bikes and horses. To anyone with a child with ABS, just treat them as you would any other child – they’ll figure out their own way to tie shoelaces, use a knife and fork, plait their hair…..
I was born with Amniotic Band Syndrome, premature at 6 weeks affecting my right hand and left foot. Even at a young age I refused to be limited by my natural defects. I believe this “gift” has only strengthened my compassion for life and empathy for others. I was even more fortunate to have parents who ignored the physical differences and never let me look upon them as being handicap. I live a full life flying helicopters, earning a computer science degree, being a flight paramedic, multi-disicpline martial artist and seeking medical school.
Love your children, let them be great and support them in every way. They are only disabilities for those who choose to recognize them as disabilities and burden with self pity.
Hi Jason,
My daughter is born with 3 short fingers on her right hand(index,middle and ring)finger. I would like to know how much of your right hand was affected? Are u left handed or right handed? I am worried how she would be able to cope up with things.i really want her to left handed evn if I know decision is not in our hands.
Hello….great to find you. Our beautiful adopted son Ewan has ABS….he is nearly 10 and an amazing young man. He also as a clubbed foot and is one of the best athletes in his school. My only hope is that he is not bullied in senior school. I gues that’s every Mother’s wish. Thanks for being here.
Annie
Hello I’m Romain. I’m 32 years old. I grew up near Lyon (France). I too was born with ABS. ABS affected two fingers on my left hand and one finger on my right hand. I also had a lesion on my left ankle but I had an operation and I can use my leg normally I’m feel good but every day I have to explain to the people why I’m the way I am. If i can help some people or just talking about you can email me.
Hi Romain, I am curious to hear about the surgery on your ankle. I have a ring around my left ankle that doesn’t effect me except cosmetically (I am grateful for that) but haven’t heard I could do anything to make it better because the skin around the ankle area is too tight.
This is to all the parents of ABS children from an adult who was also born with ABS and Adam Oliver syndrome. Love your child for who they are not what they look like. Yes they may have webbed toes and hands or may not even have hands or feet, but don’t try to make them look like everyone else in the world with surgery. Make their life comfortable to live with then let them live it and learn to adapt to there birth defect. And adapt they will. Support them in there dreams of music or sports or whatever they strive to be. Be there for them and they will realize there birth defects are something that makes them unique and that no one else in the world has and from this they will be able to accomplish great things in their lives.
Thank you …..we will 🙂
Thank you!
Hello
Im a mother of a four years old girl she have the Aminotic band síndrome, Laura today ask me why she dont have 10 fingers, she said she would like to have 10 fingers …can i join to Abs group at facebook?
Regards
Ana
How can a four years old child understand ?sorry about my english!
My son James was born on May 14, 2012. He was born with his middle and ring fingers on both the right and left hand webbed together. He went through his first surgery to separate his fingers on his right hand on April 2, 2013. Since then his fingers on his right hand have healed well and now we are fixing to go through the next surgery on June 11, 2013. He is basically like any other normal one year old except for not being able to grip somethings like normal children. We are currently receiving treatment in New Orleans.
My grandson Lucas was born on with a cleft lip and palate with 3 of his middle left fingers ‘banded’ and missing big toe on left side. I am glad my daughter was told that he has ABS as I think it is good to understand the syndrome and make sense of it. He has already been seen by the hospital treating him and the cleft specialist team have extremely supportive. This little one will always be encouraged to focus on the things he can do as opposed to those he finds difficult. My daughter and her partner knew about his cleft but not about the fingers and toes. They are awaiting the results of further tests and have bonded beautifully with him. I am hoping to learn more now that I can be a part of this support group. Thank you. Bunty
I hope this information is useful.
Please see site to get details of mechanical hands for missing fingers.
http://www.indiegogo.com/projects/robohand
http://www.robohand.blogspot.com/
https://www.facebook.com/pages/Robohand/260864887366912?hc_location=stream
I was born in Wausau, WI in 1968. My parents took me to Twin Cities for 3 surgeries. I have deformed hands and left foot. I did not know that the birth defects had a name ABS. I found out on my ten year wedding anniversary when a 16 year old lifeguard at a waterpark stopped me and asked to hear my story and he shared his. I was 31 years old and had met someone like me for the first time.
Having not lost fingers and toes I have never known anything else. When you have a loving family and support your life and outlook is what you make of it. I love the life I have!!!!
Hi, I am reading all the encouraging words while siting in the waiting lounge , and my wife is in the recovery room with my 1 year old daughter Ishanvi who has just gone through her second surgery. Every word on this website is helping me with what and how to give support to my daughter. Ishanvi has a twin sister and there is no trace of any ABS on her. I know , both my girls will go along each other very well. What i need is some help on how did your kids managed to deny credit to people making comments on the situation..
My best advice is to instil confidence in your daughter. Teach her not to hide her birth differences. Explain to other people about ABS and model for her how to educate other people. I believe that kids tease when they don’t understand and are made uncomfortable. All the best, Ruth
I’m 16 years old and I was born with ABS. I think it’s amazing that you’re concerned for your daughter. Many kids get teased growing up, and honestly I didn’t have to worry about it. There were incidents. There are incidents. But having friends and family to stick up for you and not let things like that happen made there to be less comments. I grew up in a small town. Everyone knows about me and what I have and they would all stand up for me in a second. I’m sure your daughter will have very few issues on it.
my beautiful daughter was born with ABS affecting her right hand and both legs.she doesn’t have right arm and both legs above knee.she is three years old now.i want her full story to be shared on your website.
My first born, Lamar was born August 2, 2008 with ABS affecting his left leg below the knee that his leg self amputated in utero. Now at 4 years old all I can say is that it could of been worse so I have no regrets and I realize now that me not knowing he had lost his leg made the pregnancy less stressful as he was already born premature at 32 weeks. Lamar has no fear and prefers to be free without his prosthetic leg, when others look at him he asks me ‘mom what are they looking at’ I tell him ‘baby when people stare at you just smile’ and he does. Each ABS kid on this website is strong and beautiful in every way and their fearlessness gives us courage that they will grow up loving themselves just as they are.
AHHHH! The entire guestbook has been lost. All the wonderful entries from the past ten years are gone. I welcome your entries as we start this up again.