I never saw this thread until now but when I read the first few sentences about this little boy it brought up so much emotion in me. My Aunty gave birth to a DD that had the same problem. Unfortunately she passed at 3 days of age. She would be 18 this month.

I am so happy to hear a good outcome to a similar situation. He sounds like on very special little boy and you are a wonderful friend to your friends for what you did.