My nephews heart problem.

        Hi my name is christina, my sister had a baby boy a couple of days ago and well he was born with a serious heart problem. Unfortunately his heart stop developing at 8 weeks the doctors say its a miracle he's made it thru....They gave her options as to medicine and or a heart transplant. I have many questions i dont even know where to start first of all i would like to know if anyone has ever heard of a similar case?  We are just stunned i want to say we have a little miracle baby in our hands but the doctors give us little hope. Thank you for your help.....

[Elizabeth B. Rand, MD]

Hi Christina -

I'm sorry to hear that your nephew has such a serious heart problem.  Without more detailed information about his heart defect, I can't tell if we have had similar cases here at CHOP.  I can tell you however that there are many infants born with severe structural heart disease and though each is unique, many face the uncertainties you describe.  Since identifying a donor may take time, most infants are treated medically and/or with partially corrective surgery even if awaiting transplant.  Please email back if you have other specific questions regarding transplant.  
I hope that your nephew's condition will improve.