Guestbook

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90 Responses to Guestbook

  1. Christine says:

    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.

  2. Pooja says:

    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..?

  3. dskreki says:

    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.

  4. Jim K. says:

    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.

  5. Pooja says:

    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 ……

  6. Dan Crape says:

    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.

    • Ty Esham says:

      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!

  7. Amy R. says:

    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!

  8. Mekhi says:

    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

  9. allison says:

    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.

  10. Diane Clase says:

    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.

  11. Kelly says:

    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.

  12. b higton says:

    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.

  13. Leanne Ritschel says:

    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.

    • Veronica Escobar says:

      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.

  14. Boyana says:

    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…

    • ann says:

      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.

  15. barbara higton says:

    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’.

  16. Carolyn Edwards says:

    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

  17. Jan Keller says:

    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.

    • lisa vancamp says:

      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

    • Emerald Begay says:

      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 :)

    • Joyce Debert says:

      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.

      • Jan Keller says:

        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

        • Joyce Debert says:

          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.

  18. Nancy says:

    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

  19. Ewan says:

    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

  20. Wave says:

    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!

  21. Naura says:

    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.

  22. Cheryl says:

    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 :)

  23. Angela says:

    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.

  24. Emerald says:

    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.

  25. Jessica Leupitz says:

    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.

  26. Dan says:

    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.

  27. Don says:

    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

  28. Kathy Bonilla says:

    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

  29. Emma says:

    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

  30. Patti Patti says:

    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!

  31. Marie says:

    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.

  32. Bridget says:

    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!

    • Annie says:

      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.

      • Bridget says:

        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!

  33. brittany says:

    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

  34. Delaney says:

    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.

  35. charnae Robertson says:

    My daughter was born with abs and is doing perfectly fine. She is my angel and she teaches me how to stay humble.

  36. Erika says:

    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.

    • Karen says:

      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

    • charnae Robertson says:

      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.

  37. lara says:

    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

  38. amjd says:

    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.

  39. lisa van camp says:

    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.

    • Valerie says:

      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.

      • lisa vancamp says:

        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

  40. tamara says:

    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!

    • Ruth - Evan's Mom says:

      Tamara, ABS isn’t genetic. You don’t have to worry about future pregnancies. Evan’s brother Elliot didn’t have ABS.

  41. bubbas mom says:

    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.

  42. CeCe Huston says:

    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.

  43. sandra says:

    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.

  44. A.J. says:

    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.

  45. Morgan says:

    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!

  46. Alexis says:

    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.

    • feliss64 says:

      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

      • Patrick Joy says:

        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

  47. 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

  48. Yolandi says:

    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.

  49. Jana R Hall says:

    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

  50. Tayler says:

    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.

  51. Monica says:

    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.

  52. Lorraine Butler says:

    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!

  53. Betrice Huley says:

    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.

  54. Carly says:

    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…..

  55. Jason says:

    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.

  56. Annie says:

    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

  57. Romain. says:

    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.

    • Carol says:

      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.

  58. Kent A. Dummert says:

    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.

  59. Ana Bravo says:

    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

  60. Scarlet White says:

    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.

  61. Ms Martine Harris says:

    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

  62. Vishal Shah says:

    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

  63. Lynn says:

    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!!!!

  64. varun shah says:

    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..

    • Ruth - Evan's Mom says:

      My best advice is to instill 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

    • Delaney says:

      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.

  65. balqees says:

    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.

  66. Lamar's mom (Tasha) says:

    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.

  67. Ruth - Evan's Mom says:

    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.

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