[tri-med] Re: medical policy on heart surgery

Larry and Jackie,
    My name is Katie and I don't know a whole lot because my daughter is not
born yet, but she has T-18 too. I know that we will have some of the same
problems. Our daughter (Abigail) we know has a VSD and thicken of the
pulmonary valve. So we know we are up to a long battle too. Where in Indiana
do you live? My husband are for there. When he is done with college we plan
to return maybe. So we don't know if Abby will be with us at the time, but
we will be doing the same thing you are doing right now if she is.
----- Original Message -----
From: <JMSK8RPRO@xxxxxxx>
To: <Tri-Med@xxxxxxxxxxxxx>
Sent: Saturday, July 27, 2002 1:34 PM
Subject: [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
>
>


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

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