I just want to say I am so sorry you are going through this. I SOMEWHAT understand what you are going through in the fact that you had a child with a rare genetic disorder. When I was 20 weeks pregnant, my daughter was diagnosed with CCAM (Congenital Cystic Adenomatoid Malformation). It affects 1 in 30,000 pregnancies. She was my third pregnancy but my first living baby. I had 2 miscarriages before her. So, I understand how heartbreaking it is to be given a grim prognosis after trying so hard. I was advised to have an abortion or a stillborn. Abortion was never an option. I ended up going to CHOP (Children’s Hospital of Philadelphia) and I now have a happy, healthy 4 year old little girl who is just missing a lobe of her lung. Best of luck to you guys and I am so sorry for your circumstances. I will keep sweet Lily in my prayers. Good luck with surgery!
jwagg821 karma
Is she in constant pain? If so, how do you know?
I just want to say I am so sorry you are going through this. I SOMEWHAT understand what you are going through in the fact that you had a child with a rare genetic disorder. When I was 20 weeks pregnant, my daughter was diagnosed with CCAM (Congenital Cystic Adenomatoid Malformation). It affects 1 in 30,000 pregnancies. She was my third pregnancy but my first living baby. I had 2 miscarriages before her. So, I understand how heartbreaking it is to be given a grim prognosis after trying so hard. I was advised to have an abortion or a stillborn. Abortion was never an option. I ended up going to CHOP (Children’s Hospital of Philadelphia) and I now have a happy, healthy 4 year old little girl who is just missing a lobe of her lung. Best of luck to you guys and I am so sorry for your circumstances. I will keep sweet Lily in my prayers. Good luck with surgery!
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