Late Term and Child Loss

Possible sma

drox924drox924 member
edited February 2016 in Late Term and Child Loss
I have had such a rocky road with this pregnancy. I bleed for the first 12 weeks and was told we might loss this baby. After 12 weeks we where clear and baby was on right track. At 15 weeks I found out I was having a girl and was so happy she was so active in ultrasounds. 

At week 20 we went for the normal 20 week scan and she was on her  belly we thought it was cute and she was lazy.  My doctor sent me for high risk scan because she noticed she had club feet no big deal easy fix. At 24 weeks still not alot of movment and hey laughed again saying she was a lazy baby. 

At 27 weeks we went for a 3rd scan and she still was on her belly barely moving her arms. She also had alot of fluid meaning she does not swollow. We did amnio test and I'm 29 weeks sill no results but after talking to all doctors they all agree they think she has sma type 0 and said it's not always genetic and she wont live past 6 months.
What do I do.  I'm so sad and lost. I cry none stop and don't know how to handle this. My kids are so happy and excited how do I break the news to them. I feel like im in a nigtmear. All our hopes and dreams for this angle are no longer a possibility. Has anyone els experienced this i need advice.

Best Answer

Re: Possible sma

  • @drox924 I am so, so sorry this is happening. It is the worst thing that a woman can be put through I think. I am so sorry for your husband too. Lots of hugs and tears and love to you. 
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  • Thanks you so much
  • @drox924 how are you doing?

    I wanted to ask you how old your kids are. We had to explain to our kids, who are 7 and 9. 
  • I am so very sorry for you and all that you have been through. Thinking of you and your family and sending hugs your way.
  • @drox924 I am so sorry that you are going through this.  We recently found ourselves in a very similar situation with our daughter.  So much of your story sounds eerily familiar to ours.

    A few weeks ago we had our 20 week scan and were referred to a perinatologist because of some "concerns". Several appointments with a couple very highly regarded doctors followed where they were all highly concerned about her lack of movement.  She also had problems with her legs, at her 20 week scan we heard fused legs, at the beginning of the perinatologist appointment we heard clubbed feet, but by the end we saw that her umbilical cord had completely knotted around her legs and was already starting to cause swelling.  They were very concerned about blood flow.

    We were not given a diagnosis as we were urged to wait until we see what the microarray tells us.  SMA was definitely mentioned as the potential problem.  We were told however that because she was always showing such severe mobility issues, her chance of making it to term was highly unlikely.

    I know just how difficult this is, I am so sorry that you have to endure this heartache.  I will be thinking about you and your precious babe.
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