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21 weeks pregnant and just found out my baby girl has a cystic kidney and a hole in her heart. help!

Ally - posted on 03/27/2011 ( 4 moms have responded )

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at 8 weeks baby had thickness at the back of her neck which raised risks of a genetic disorder now at 20 weeks just found out she has a cystic kidney and a hole in her heart. just need any advice from anyone that might know what is going on. at 16 weeks i tried an amnio however baby moved to the area where the insertion was going so i took it as a sign not to go through with the procedure so i had them take the needle out of me and away from baby before it entered the placenta so the amnio was unsuccessful. after the 20 week ultra sound the doctor said an smnio would now just tell us what we already know. The doctor was very concerned for babys life and did not seem hopeful she would make it? i am very scared because scince 8 weeks they have given me the option to terminate because they feel there is a risk of a genetic disorder & she will not make it. i do not agree and will not terminate this pregnancy, i believe she will make it through this. also i was wondering could this cystic kidney be the genetic disorder?

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Iridescent - posted on 03/27/2011

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The kidney would be something to watch, certainly, as Tara posted. The hole in the heart though, unless it's an abnormal one (did they tell you what it was called?) it's supposed to be there - http://en.wikipedia.org/wiki/Fetus#Circu... - it closes after the baby is born and takes a breath.

Pia - posted on 03/27/2011

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I have a hole in my heart (not severe) and the only time it's been an issue is during illness and pregnancy.
As for the kidney, I can't help you much except say you're very much in my thoughts. I think you have made an incredibly hard and brave decision and I am amazed at your strength! Don't waver, you've made the right choice!!

Amy - posted on 03/27/2011

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My daughter was born with a hole in her heart. You'd never know it now. I did take extra magnesium and calcium - doc said it would help her heart heal/grow like it's supposed to. She was born with only a pinhole and was only in NICU 24 hrs. Thank you, God!!!!

Not knowing TOO much about the kidney thing. I was just told I need another ultrasound due to one kidney not being in proper place. Only need one kidney to survive, though, right? I have faith your little lady will make it through all this. All you can really do is eat all the fresh fruits/veggies and healthy omegas/proteins to aid kidney support and hope most those nutrients she sucks up to support herself. Lots of love to you both.

Tara - posted on 03/27/2011

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The cystic kidney is likely what the genetic disorder is - this link has more information on it for you: http://en.wikipedia.org/wiki/Polycystic_...
Here is another link for kidney disease in infants/fetus: http://cybernephrology.ualberta.ca/nephk...

Your baby can definitely live through the hole in the heart (my sister had 3 in her heart when she was born and had successful repair surgeries - she is now 37). The kidney disease is the concern here because of the complications that can occur. If you have chosen not to terminate the pregnancy (entirely a personal choice) then you have to be prepared for the possibility that the kidney disease could shorten your child's life, and be aware that it is possible for the disease to be fatal very early on. That being said, it is possible that the fetal scan that you had done is not completely accurate so there may be something else going on. I had a friend who had the ultrasound done and was told her baby would be born with Down's Syndrome and her son was born healthy.
As you are planning on carrying your daughter to term, try to keep positive and hope that the testing was not entirely accurate, but make sure you are prepared for it to be accurate.

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