[tri-med] Re: looking for heart surgery info

Soleah is 14 and has been treated by Texas Children's cardiology for all of her 
life.  They have also been very open to anyone I have referred to them.  I'd 
also be happy to speak to anyone that needed more information.  She had repair 
of 2 VSDs, and ASD, PFO, PDA and then a residual pacemaker which she has had 
replaced twice and going in again soon for her 4th.
   
  Nanci (832-577-4321)
"Kaufman, Faye" <fkaufman@xxxxxxxxxxxxxx> wrote:
  Monica, my daughter Morghan had open heart surgery at 2 months, she is
full t-18. Her surgery was done at Texas Childrens Hospital. Our
doctors harbor no prejudice about T-18 and have been willing through the
years, Morghan is almost 12 years old now, to treat all the Trisomy
children we have referred to them.=20
My phone # 713 881-3442/ 281 480-1243.
Faye

-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx]
On Behalf Of stamtorch@xxxxxxx
Sent: 07/18/2008 10:19 AM
To: tri-med@xxxxxxxxxxxxx; tri-family@xxxxxxxxxxxxx
Subject: [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.???=20

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.?=20
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.??=20

The family is in Westchester in NY.? Thanks again for any help you can
offer.?=20

I will be back with a family update soon.


=20


?Blessings,=20
Monica=20

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



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




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

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