Living with Amniotic Band Syndrome

posted in: Large Family, Special Needs | 18

Living with Amniotic Band Syndrome

When we first got The Call, back in 2002 about a six day old baby boy, we were told he was “missing some parts of some fingers and toes”. We met that baby boy, Mordecai, three and a half weeks later when we brought him home to be our son. Within a few weeks he had two appointments at Seattle Children’s Hospital and we were told that the missing digits were caused by Amniotic Band Syndrome.  With this syndrome pieces of the amniotic sac  become loose and wrap around parts of the body and cut off circulation. Amniotic Band Syndrome can cause anything from mild scarring to amputation.

In researching and finding links for this post I discovered they can now diagnose this prenatally and do fetal surgery if necessary! How cool is that?

Mordecai’s hand at 18 months, just before his first surgery.

Mordecai’s would probably be considered “moderate”. He has actual amputations (including toes on both feet) but isn’t missing an entire foot or hand like some people. Amniotic Band Syndrome occurs in one out of every 1,000-2,000 births. Along with the missing digits, Mordecai was born with distinctive scarring on his torso where bands had been, and a large scar around one ankle. He had his first surgery at 18 months where the doctor released some bands (you can see it on his pinky) and tried to widen web space between his thumb and first finger. A year later he had essentially the same surgery done again to widen the web space. 

Mordecai’s missing digits have caused very few issues over the years. His gait is a bit off (when he was about 18 months we were at a church picnic and someone, having no idea about his missing digits, commented on the “funny way he has of running“). Since he has never had a full set of ten fingers and ten toes, he has adapted very well to what he does have. 

Living with amniotic band syndrome

Mordecai’s hand in 2012, just before his third surgery.

In 2012 Mordecai’s middle finger really started bothering him. He had a nail growing there that got more and more painful as time went on. He had surgery to amputate the tip of the bone and remove the nail and bed. The surgery went well but the healing was horrendous.

amniotic-band-syndrome

This is what it looked like two weeks after the surgery. The white, porous part sure looked and felt like bone to us, though the doctor insisted it wasn’t. It finally healed up and gave him no more pain. We thought that would be the last surgery. IMG_3647

 

Mordecai’s hand in 2015.

As you can see, two and a half years later it looks great. Well now, the ring finger is giving him trouble. His bone seems to be growing faster than his skin and the skin is drawn tight around the sharp tip of bone with no padding. This makes it mildly painful all the time and extremely painful any time it gets hit or bumped.Orthopedic clinic Seattle Children's hospital 

Orthopedic clinic Seattle Children's hospitalYesterday he had an appointment at Children’s with an orthopedic surgeon. We scheduled a fourth surgery for early next month. He will have the tip of his middle finger amputated and the extra skin will be used to pad the finger. He will also be having two nail beds removed on his toes. The onset of puberty (according to the doctor) is bringing on all of this new growth. His body is trying to grow toenails where there were none before and it is very painful. His toes will crack and bleed and be unable to heal because a small, malformed nail is trying to make its way through.  

The surgery is scheduled for just before spring break, so he will have over a week to heal and recover before going back to school. Last time, he experienced very little pain afterward. We gave him Tylenol and the prescription painkillers (and plenty of movies and popsicles) and he was just fine. I anticipate a similar recovery this time.

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18 Responses

  1. Tiffany Burton

    My sweet Haley Joy has Amniotic Band Syndrome. We adopted her 3 years ago and is doing amazing. Her bands were around her legs in various places, it is unsure exactly how severely she was affected because she also has AMC (Arthrogryposis Multiplex Congenita). It’s a hard row to hoe, but I wouldn’t change anything!

  2. Will keep Mordecai (and you all) in our prayers. I would imagine constantly guarding a body part from bumping to be tedious and irritating.

  3. Praying for another successful surgery! What a trooper of a young man you have!

  4. Your son is beautiful! I’m sorry he has pain due to the new growth of nails and pray that the fourth surgery goes smoothly. What a strong young man and good mama.
    Thank you for sharing…I invite you to please come share this story and link up with me now {if you haven’t already} at http://www.wrightsimply.com/2015/03/wordless-wednesday-link-up.html
    Have a wonderful weekend ahead! xx Ashleigh @SimplyWright

  5. As if puberty isn’t bad enough already. Poor little guy.

    • bakersdozenandapolloxiv

      I know 🙁 He hates it when other kids ask about it (though usually they are just curious, not mean).

      • I have a very large scar on one arm and have a host of answers for when people ask what happened. My current two favorites are grizzly bear wrestling (“you think that’s bad, you should see the bear!”) and chainsaw juggling accident.

  6. Thank you Mordecai for letting your mom share this with us. We will be praying for a quick and easy recovery!

  7. CANDY SMITH

    My brother has ABS, he has no fingers on his left hand and stunted fingers on his right. He had webbing removed on his right hand and one tiny partial finger removed on his left hand when he was an infant. I was only 7 or 8 then but I remember that the healing was long and drawn out. He had to have further surgery to remove infected tissue. Growing up, it never really occurred to us kids that he was really any different, the only thing I remember him having trouble doing was learning to tie his shoes with one hand. He wore Velcro until he was about 9 and then decided to master tying because there was a particular style of Nikes he wanted. He’s thirty now,married with 2 children, and has a very successful career. He was always so very determined to accomplish everything he wanted to do.

    • bakersdozenandapolloxiv

      Thanks for sharing your perspective! I had never heard of it until Mordecai was born. It is great to hear from a sibling and to hear how well your brother was done. We rarely think about Mordecai’s fingers and toes. Most people who know us aren’t even aware of it.

  8. My baby has ABS. I am 20 weeks pregnant with him. Looks like the bands are around 3 of the fingers on the right hand and they haven’t seen the left hand open normally in several weeks. The bands are also around the umbilical cord which makes things incredibly risky. We have faith he will make it to delivery at 32 weeks but very good to know what we have ahead of us.

    • bakersdozenandapolloxiv

      Wow. What do they do when they know about it prenatally? That must be so scary. Our son is adopted, but they had no idea about the bands until he was born. I will pray for you baby. Feel free to email if you need someone to “talk” to

  9. […] learner” who would need lots of encouragement, help, and patience. He was also born with Amniotic Band Syndrome but seemed to have won the lottery in that department, he was only missing a few parts of a few […]

  10. Melody Anne Brown

    My husband and I just found out yesterday that our little girl who will be born in October will be born with no right hand that the doctors suspect is from ABS. From what they can see her right hand is the only thing affected so far but we will have regular check ups to see how things progress. We are just trying to process what this will mean for us and for her and are looking for any recommendations on reading material or resources that anyone else effected by this has found helpful on this journey.

Please share your thoughts!