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She was born with heart defects and is in congestive heart failure. There is a slim chance that her heart will heal on it's own but she most likely will need open heart surgery. Once the defects are fixed, she will mostly have a normal life but will need to be careful about certain things and will need regular followups with her cardiologist.
And I am very glad your friends daughter is doing so well! It is wonderful that there are so many advancements today My Uncle Jeff, born in the 50s, never made it home from the hospital after being born with heart defects My Dad was about Sterling's age when his brother was born and died and those memories have been really present for him since Iz was born. He is spoiling her like crazy and keeps track of all her appointments so he can watch the little guy (to give us some peace at the appts!) and get progress reports. I think he worries almost as much as I do
I'm so sorry to hear that your father and grandmother had to go through that.
I'm so surprised that Isabelle's heart defects were not detected sooner so that you could be better prepared. Esp in this day and age. I had so many tests with my last two pregnancies, but then again, I was of "advanced maternal age" so that may have been why....
Most heart defect go unnoticed until after birth--from my reading, it seems as though only the really major defects are picked up before birth. There are several groups out there trying to get pulseox screening added to newborn screenings to catch more defects at birth. 1 out of every 100 babies has a heart defect and far too many are found when it's too late