Well I got the call from my genetic counselor today. She confirmed that she does have full term Trisomy 13. We already knew what the results would be but we did the amio just to have a definite answer.
On July 4th, when I found out I was pregnant, I would have never guessed this is where I would be. Pediatric Hospice will be the next phone call I get. They will be able to help us with everything, from counseling to the care at home if she makes it that far.
When I had a test run back in August called Materna 21, it is a blood test to have early detection of any issues such as this, I swore I would never abort it if I found out the baby had problems. I had in my mind such things as Downs or Edwards, not what my baby has been born with. It is practically a death sentence.
When we had the ultrasound done last Monday we saw a prefect little girl, her profile is beautiful and she has all her limbs, I just knew that test had to be wrong. But then the doctor came in and gave us ALL the bad news. First he said she had a under developed heart chamber, the one that pumps the blood to the body, then she has enlarged kidneys due to cysts that have formed with the kidneys. The good thing right now is that she is holding fluid still, but don't know for how long. And last, she has what they call Dandy Walker syndrome. She has not and will not form the left side of her cerebellum. All this is what looks like a perfect baby girl. The really bad thing about Trisomy 13 isn't just what she has wrong with her now but that the T13 effects everything even more when she is out of my body's protection. It can effect her breathing and her body's ability to continue functioning.
I have cried everyday since then but I know we were given her for a reason. Don't know quite yet why but I know she is to be special. I think about what I am doing to all mine and Andy's family, Andy included, and sometimes I feel selfish that I am making everyone go through this with me. I just hope everyone understands in the end.
I have read and heard and seen so many stories of other families' journey through this and it is sad but they are all happy that they didn't give them up, even with all the heart break. If I ended it now I would still have the heart break but just with guilt and wonder to added to it. Ending it will not change the sorrow. It started back when I got the test results back and it will always be there, I will just feel better knowing I am trying to give her a chance.
Congratulations on your baby girl! I know it may feel strange to receive congratulations....but she deserves them, and so do you. While it is definitely the harder choice, the decision to keep your baby is a beautiful decision, and one you will never regret. Try to find moments of joy in your pregnancy, and put these in her baby book, too. I'll be praying for your family.
ReplyDeleteThank you! I think reading everyone's stories, including yours has made it easier. I know I am not alone in this journey and that I will be glad that I did it even knowing that she may not be with us for long.And thank you for the prayers :)
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