This letter is to everyone out there with goldenhar syndrome or a family
member with goldenhar. My name is Shannon, our son was born aug. 23,2000 with
goldenhar. He spent 6 weeks in NICU and then came home. The hospital he was
born at told us to let him die because he was a complicated child and this
was our first baby and we were young parents, (not to young, I'm 22, husband
is 29) They told us there was no hope for our baby. We started to search
for doctors and found one in Ft. Lauderdale. Our son has had his first major
surgery 4 weeks ago to correct to clefts in his lip. We were told that he
ranks #4 in severity in the usa. I would love to here from other people with
gs for I would do anything for my son. He is so precious to us. I know that
GS isn't hereditary, but I am still nervous. We decided to try again and
have one more child. I am now 5 weeks along and scared. Any info. from
anyone would be greatly appreciated.

thank you, shannon