[tri-med] looking for heart surgery info

 Hi all,

It has been a long time since I have written.? I have been in lurk mode for 
awhile.

I am about to be contacted by a family that has a newborn who was scheduled for 
heart surgery until the genetic tests came back showing T-18.? Now the hospital 
"prefers" not to operate.? The ethics committee would "prefer" that the family 
decide.? The parents are being given my home number to talk to someone who has 
a child with T-18.? My son, Michael is mosaic and has really been doing so 
well.? He did not have any heart issues but did have surgery for TEFistula and 
EAstrisia(sp?) repair.??? 

Any information you could get to me would be appreciated.? I do not know much 
about the baby other than surgery was scheduled until they discovered the 
T-18.? 
Of course to me , if all else seemed ok with the baby and he was healthy enough 
for surgery, a diagnoses of T18 should not stop it.....but then again I am not 
a "professional" so what do I know.?? 

The family is in Westchester in NY.? Thanks again for any help you can offer.? 

I will be back with a family update soon.


 


?Blessings, 
Monica 

homeschooling Mom to AJ (13), Christine (10), Mary Elizabeth ^l^, Michael (age 
6, Trisomy 18 mosaic AKA Edward's syndrome) and Birgitta (age 5, adoption 
finalized 2/1/05 !!, Trisomy 21 AKA Down's Syndrome, Fetal Alcohol Syndrome, 
Autism, SID)


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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