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Anyone have a baby w/ Amnotic Band Syndrome?

roxyttandmeroxyttandme member
in Special Needs

7 weeks ago, we lost our daughter to ABS. We were told that her limbs were amputating inside of me at almost 24 weeks gestation. We wouldn't allow our daughter to suffer in such an extreme way- so we terminated the pg.  During my times of weakness, I second guess our decision. I know in my heart we did the right thing- but, I still wonder "what if... "

Does anyone here have a child w/ ABS? What is it like? What are your challenges?  DH and I will ttc again soon. Just wondering if we will run into this again on round #2 and what we would be up against.

Any info would be great.

Thanks,

Elizabeth

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Re: Anyone have a baby w/ Amnotic Band Syndrome?

  • mayte06mayte06
    I am so sorry for you loss. I know that no matter what people say you are always going to think of the "what if", but if it makes you feel a little better, I think you did a courageous(sp) decision for not wanting your little girl to suffer. I am an NICU nurse and I have seen a couple of babies with ABS...it not a pretty sight and they do suffer a lot. My heart goes out to your family and I will keep you in my thoughts and prayers. If you need to chat, you can always page me or send me a PM.
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  • SweetMonkeySweetMonkey
    My hreat goes out to you and wish you the best w/ TTC #2.
    imageimage
    Max 4-08-08 and Michael 2-03-91 (19 years olds)
    image Both boys were born w/ hirschsprung's disease, you find yourself facing this dx, please feel free to ask me any questions.
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  • amajaneamajane member

    I have a friend who recently terminated a pregnancy due to a serious heart defect. I know she feels the same way as you with the "what if". More than anything, she just wants to be pregnant with her much wanted baby.

    You really did make the right decision. I try to tell my friend that too as much as possible. I know that doesn't make the pain go away but I hope one day you come to peace with your choice. You saved your baby from a lifetime of pain.

    Have you met with a geneticist? What are your chances this will happen again? 

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  • roxyttandmeroxyttandme member
    imageamajane:

    I have a friend who recently terminated a pregnancy due to a serious heart defect. I know she feels the same way as you with the "what if". More than anything, she just wants to be pregnant with her much wanted baby.

    You really did make the right decision. I try to tell my friend that too as much as possible. I know that doesn't make the pain go away but I hope one day you come to peace with your choice. You saved your baby from a lifetime of pain.

    Have you met with a geneticist? What are your chances this will happen again? 

    We met w/ a genetcist and chances are it probably won't happen again - lighting rarely stricks twice w/ ABS. After just going through is - and still trying to heal- my fears of a reoccurance are extreme. I don't know if I would ever "just be" while pg- I will always be scared. I don't even know where I am going w/ this... I guess I was hoping to get some insight on what it would have been like if we didn't make the decision we had. I know we would have had up to a double amputee. I know she wouldn't have had much use of her hands and would have had surgery after surgery to try to repair as much as possible. I guess I just won't "what if..."

    Thanks for the support, ladies. Your babies are all special gifts from God.

     

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  • mrsmikeymrsmikey

    I'm so sorry to hear about your DD.  I don't doubt you made the right decision, although I can imagine it's still hard to swallow.

    A friend of mine from HS had a DD missing an arm from ABS.  I am not super close with her, but I do know that they didn't know about the missing limb until she was born.  I don't know if they missed it during the u/s, or if maybe she didn't get any u/s.  But regardless, they didn't know about it.  Fortunately, she is healthy and happy and it has not been an issue.  When they checked her placenta, they said there were more bands in it, and they are just very fortunate it didn't affect her in a worse way.  They have one other healthy child. 

    I wish you the best of luck with your future journey.

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  • zeptattoozeptattoo member

    I remember your post when it happened and my heart just broke for you.  I understand the "what ifs" but you totally did the right thing.  Your post led me to do some research and what I saw for the extreme cases was not a decent quality of life.  I know it was a hard descion, but the way I see it, some emotional pain addressed now is much better than a lifetime of physical pain later. 

    I also read that ABS is the result of a total accident and a repeat is almost impossible since it is not a genetic thing.  I'm not sure if that contradicts or compliments what your doc said, but again, your case led me to do some outside reading.

    Good luck on TTC.  Hope to see you on the messages boards again soon.

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  • KatB12KatB12

    I think I remember you posting a while back and I am truely sorry for your loss.

    While we didn't have ABS but our daughter was born missing her left hand and her forearm is shortened. We found out after the 20 week ultrasound, basically they couldn't find anything in regards to why it happened. They checked everything from my placenta to my uterine band and nothing.

    We have met other families on this board with the same defect and no other problems that have gone on to have children with all 10 toes and 10 fingers. I don't want to say they went on to have normal or perfect children because honestly I feel my daughter is perfect. She is healthy everywhere else( limb deformities can go in conjunction with heart and kidney problems).

    Good luck with TTC.

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