[tri-med] medical policy on heart surgery

Philip James is 4 months, T18, large VSD, and doing very well, other than=20
slow growth and moderately hypotonic (low muscle tone...except when he is=20
mad).  Development appears normal, though slow. =20

Last Friday we found that he now has pulmonary hypertension, which is a=20
progressive condition, so time is important.  The cardiologists don't want t=
o=20
operate on trisomy 18 children because life expectancy is so poor; we are=20
told they don't live beyond infancy even with a good heart.  We have heard=20
that T18s die for unexplainable reasons.  Their heart just stops, something=20
like apnea, I guess.  We were also told they don't do well with surgery: slo=
w=20
recovery, dependency on ventilator, or heart failure. =20

We have heard this consistently from the doctors, but I can't find any basis=
=20
for this in the personal testimony of parents at trisomyonline.  I see lots=20
of older kids.  I see kids who have the strength for difficult operations an=
d=20
survive.  These kids do have a lot of medical problems, but they seem to=20
respond to treatment much like any other. =20

My experience is that Philip develops more according to size than age.  He=20
was full term, but had labored breathing more like a preemie.  When he grew,=
=20
his breathing became normal.  Apnea events diminished and disappeared.  He=20
gets stronger every day.  Now our life is more like having a one month old.=20=
=20
He was 4.7 lb at birth and 8.3 lb at 4 months.  I expect he (we) won't sleep=
=20
through the night until he is large enough.  Philip was a little fighter whe=
n=20
he was born.  He responds beautifully to love and prayer.  I don't see the=20
problem.

I have tried to find some basis in actual experience for the medical=20
profession's bias against trisomy children, and I can't.  Please help me out=
=20
here.  I'm sure you parents have seen a lot more than we have.  The=20
recommended medical treatment for trisomy is abortion.  We were told to take=
=20
Philip home without monitors and not to code him.  Now it appears that=20
cardiologists are just assuming we will treat Philip with medication until=20
some complication of the VSD kills him.  This isn't the health care that we=20
need.  We need all the options.  Thanks to a fireball in Florida that one of=
=20
you connected me with, we have an appointment with a cardiovascular surgeon.=
 =20
I still have to deal with the cardiologists and this (myth???) about trisomy=
=20
18 children.  I'd like to know the facts.

Needing advice in Indiana=E2=80=A6Larry and Jackie Greenbank
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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