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celticwinter2526
04-23-2010, 08:46 PM
mom of a 15 month old boy with spinabifida.

i was recently asked by my community to help support and answer questions for another family who just had a baby girl with a t12 lesion and arnold chiari. i just tried to get in touch with the family today to find out they were taking the baby girl off of life support. she could only breath on her own for 10min at a time and would have spent the rest of her life in a hospital. i feel very bad for the family but on a more selfish note. this was the first time that it hit me a year ago we could have been forced with the same desicion. i guess god stepped in for my son but its still hard to finally get hit with the truth that not every kid does as well as my son has...it seems to be the opposite in fact that many more children still die from complications than live...and this baby was seen at yale,which is one of only two hospitals that take care of spina bifida births in new england.....sorry to go off. i just needed to get it out. like i said it was a crappy day

misty
04-23-2010, 08:55 PM
I'm so sorry you're having a bad day. I'm not sure what to say because I know nothing really makes the death of a child any easier or better. I'll pray for you and the family that lost their little one. Just know that there is lots of love and support here. You can vent and say anything you need to. We are here to listen and love you.

celticwinter2526
04-23-2010, 09:00 PM
thank you. I get so caught up in my sons care that I forget to reach out sometimes lol. thank you for the support.

misty
04-23-2010, 09:02 PM
You're a mommy! You're supposed to be completely tied up in your son's care! That's what makes you good for him! And if he's not occupying most of your time making you nuts he's not doing HIS job! Lol!

Avocado Baby
04-24-2010, 11:05 PM
Sorry to hear that sad news. Thinking of you and the family.

Emm
04-25-2010, 12:06 AM
It's so painful to think of someone losing their little child who they looked forward to bringing into the world.
So glad your little one is doing okay.


:peace:

Jill
04-25-2010, 02:46 AM
:( that is a tough thing to hear about.

jeannemarkowski
04-27-2010, 04:06 AM
That breaks my heart. Was the chiari just so bad she couldn't breathe? I've never heard of anything like that. Normally, the SB kids are the healthiest ones in the NICU.