In a message dated 5/25/01 2:53:25 PM Eastern Daylight Time,
rabell@xxxxxxxxxx writes:
>
Dear Rory,
Sorry you have to come "here" but glad you found this great list. My son
was diagnosed with T18 after birth. We had no idea prenatally, thus he was
resuscitated at birth and placed on a ventilator from which he was never
weaned. Nathan lived for 7 months in the NICU so I've got some "hospital
experience". The surgeries we agreed to were doctor recommended 1) a g-tube
2) a trachea. The surgery we agonized over was placing a shunt. Nathan was
born with hydrocephalus and the doctors told us that a "normal" baby would
undergo shunt surgery immediately. In our case it was namely up to us. We
did not want to put him through pain so we took a "wait and see" approach.
Nathan did pretty well, so well in fact, that the docs checked his blood
twice for mosaicism. It always came back as full T18. Finally we agreed to
a shunt and the surgery was a success. Nathan's death was probably due to
aspiration. Hope this helps. The choices are hard; wishing you all the luck.
Fay Mom of Herman-7, Jacob-6, Moshe-4, and little Nathan full T18
10/28/99--5/24/00
Building ___ooOOoo__ Rainbows
www.trisomyonline.org
Families Helping Families On-line