My 7 month old daughter, Phoebe was born with Trisomy 13, meaning she has an extra 13th chromosome. Most of these kids don't live more than a year and are profoundly retarded. Phoebe had a congenital heart abnormality as a manifestation of this syndrome and was dying of congestive heart failure when we brought her to the emergency room about 2 months ago. She just had her second heart operation 2 days ago. The first one didn't work, so they did open heart surgery to close up the hole in her heart the day before yesterday. She's doing well. She's a real fighter. We had been living at the hospital for more than a month and are expecting to stay quite a while longer. Your good energies would be greatly appreciated.
post #1 of 21
3/19/03 at 7:40pm