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2 Bumps

Amniotic Band Syndrome....Has anyone ever lost a child to this here at cafemom?

I was told by three different doctors how rare it is for our child to pass away from this and in most cases the children live but have disabilities due to the bands constricting body parts. Our son Ethan is the 101 case nown in the USA. This all just sucks, my heart is shattered and I worry that our boy is in pain even with the doc's telling me he is not because he formed this way from days of conception.

Answer Question

Asked by Suzie2mom at 5:13 PM on Nov. 3, 2010 in Pregnancy

Level 12 (824 Credits)
Answers (3)
  • I have not heard of this, however, I am so sorry to hear that you have to go through this. I would listen to what the drs have to say. They have access to all the statistics and past medical information about your condition. I wish you the best of luck.

    Answer by Kword at 5:17 PM on Nov. 3, 2010

  • I'm sorry to hear that. I don't have first hand experience, but I read an article (I'll see if I can find it, I will pass it along if I can. It was in the New England Journal of Medicine) not too long ago that said children don't typically pass away, unless the band is in a really bad position. What your doctor said about pain makes a lot of sense, and that was touched on briefly by the article. Ethan isn't hurting sweetie, it's just the way he is. Please - listen to your doctors, don't read anything about this on the Internet, no one knows your particular situation better than your doctors (and you of course!) There is every possibility that, aside from a relatively small physical issue, you will have a beautiful, wonderful Ethan to hold soon.

    Answer by Scuba at 5:26 PM on Nov. 3, 2010

  • My daughter was born with a disability due to ABS. I have heard of some losses in the community but I hear of many many more beautiful children being born with ABS and having a wonderful perfect life. My daughter was born without fingers on her left hand and has a smaller palm and wrist due to ABS.

    There was no pain it just stopped the formation of the fingers, hand and wrist. My daughter is now 9 years old and plays the guitar, water skies, plays hand bells, rides a bike and to be honest does anything a normal child does but she does it with one hand.

    I know your feelings. I know how scary it can be and that is why we have created a site called Little Hand Big Heart. We want to make everyone aware of ABS one little hand at a time. The more people we make aware of this the less scary it is going to be for the parents.

    Please contact me if you have any questions or just want to talk.


    Answer by LHBHMom at 11:46 AM on Nov. 4, 2010

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