A friend of mine is due with her first baby in early July. She found out recently that her baby has a very rare heart condition that will require him to have open heart surgery when he is 3 days old, again at 6 mos, and again at 2 years. She has been told by her doctors that his chances for survival are very slim. She is obviously very distraught and is torn between trying to be hopeful and joyous about the birth of her child to preparing herself for losing him. I just wanted to know if anyone had an experience similar to this and if so, would you be willing to talk to my friend about how you got through it?
I'm so sorry for your friend. What a terrifying experience.
I have not personally gone through this, but know of two people who have. Only one baby made it. I can find out if they would be willing to talk to your friend. I can't make any promises but will give it a shot. It might be worth it to check online for a support group for these parents.
Hi there, I'm so sorry to hear about your friend. I am in Albuquerque and have a little girl with a heart defect. I know the pediatric cardiologists at Presbyterian and I know that thet are excellent doctors. Is your friend coming down here to see them? I know she will be in good hands.
Please contact me if you would like any information that I may be able to provide.
Oops, edited to say that I was assuming your friend is in NM. You know what they say about assuming though...
i know someone who when he was born, had valves in his heart reversed, because the section that pumped to his lungs was trying to supply his whole body. he was a "blue" baby, and had surgery when he was just 2 weeks old, and again at 2 years to put a piece of vein from his leg in his heart to reroute the blood. his whole heart was also inverted to aid it's pumping power and circulation. the procedure was very new for the time, but he would not have survived without it.
he is 32 and healthy today, and i married him 10 years ago. he is one of the oldest survivors of the procedure he had, and lives a full life with very few limitations and no problems whatsoever. it is possible to come through these things! i will keep your friend and her baby in my prayers. all love, laura