Saturday, January 23, 2010

Well, that might have been stupid

I'm still not sure how to feel about this. I finally found someone with the same deletion that Aiden had. One person, in all of the internet, with several professionals looking. I emailed the parents (they had left contact info on a support site) and found out they have a living 6 year old daughter. She is in first grade, has normal intelligence but severe delays. She has congenital hearing loss and is the same size as my (small for her age) 3 year old. But - she laughs, she has friends, she can give hugs. It hurt so much to read about what my son could have been if he hadn't been so severly affected. On the other hand, it was the one thing that finally made me feel better about our decision to end the pregnancy. This little girl had no visible defects when she was born. She was small but otherwise looked fine. She has had a couple of surgeries related to the birth defects that couldn't be seen, but nothing like what Aiden would have had to endure. She had no heart, brain, or kidney defects like Aiden. She didn't have the cleft lip and palate or the spina bifida. So I am sure now that he was in bad enough shape that it is doubtful he would have lived to be born. But - I'm so angry that he didn't get the chance this little girl did. Why was he so much worse? Did the lab miss something? Are we just that unlucky? It's very, very painful to imagine that little girl, and miss my boy, and know that it doesn't matter how she is doing, Aiden never would have done that well. It's not fucking fair.

I want my baby. I want my baby. I want my baby.


  1. I did this too - searching obsessively for babies born weighing less than a pound. I don't quite have Sierra's full story on my blog yet, but basically there was a problem with the placenta and she was so severely growth restricted that from 22 to 26 weeks the ultrasound estimate of her size was consistantly 12 ounces. After 24 weeks we were told we had to decide if we wanted to deliver her, and when. Ultimately we decided it was too risky to deliver a baby who was only 12 ounces; we let her go in my belly and she was stillborn at 27 weeks and 5 days. She weighed 12.1 ounces and was 10 inches long.

    Anyway, I was also never sure if what I found made me feel worse or better. I also only found one other family who had almost exactly the same thing happen - their son survived but had many disabilities and delays likely caused by a stroke that occurred before he was born. I do still wonder if we should have delivered her and what the outcome would have been, but I'm pretty confident it wouldn't have been good. But I also understand the anger, the "why did this have to happen to me, to my child?" Intrauterine growth restriction is not that uncommon, but to have it be as severe as Sierra's was is quite rare.

    You're right - it's not fair. I'm so sorry.

    Babyloss is such a confusing and awful jumble of emotions. One of the hardest but most helpful things for me was to give myself permission to feel what I feel, be it rage, dispair, overwhelming sadness, or moments of peace, happiness, or hope for the future.

  2. I wish you could have your baby. Whole and well and smiling.

    It's so unfair. So so unfair. The words aren't strong enough.

    Thinking of you xx

  3. It is unfair. I often think things like you - our baby had Beckwith Wiedemann Syndrome. It's rare - 1 in 15000 but most kids with it go on to have healthy happy lives. Yes their is surgery and possibly childhood cancer to survive first. So I feel ripped off - not only did Matilda have a rare syndrome but in her case, it was severe. Some babies it's so mild, it's not even diagnosed until they're older.

    I wish you had your baby.