Guestbook

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49 Responses to Guestbook

  1. 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.

  2. 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.

  3. 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

  4. 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.

  5. 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.

  6. 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.

  7. 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

  8. 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.

  9. 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.

  10. 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.

  11. 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.

  12. 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.

  13. 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.

  14. 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.

  15. 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!

  16. 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

  17. 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

  18. 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.

  19. 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

  20. 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.

  21. 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.

  22. 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!

  23. 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.

  24. 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…..

  25. 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.

  26. 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

  27. 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.

  28. 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.

  29. 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

  30. 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.

  31. 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

  32. 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

  33. 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!!!!

  34. 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.

  35. 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.

  36. 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.

  37. 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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