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

Hi Larry, glad to see that you found the list...and hope that you can get 
some info that will help Philip get the medical attention he needs.

Dennette, mom to Dylan t18, 6yrs old


>From: JMSK8RPRO@xxxxxxx
>Reply-To: tri-med@xxxxxxxxxxxxx
>To: Tri-Med@xxxxxxxxxxxxx
>Subject: [tri-med] medical policy on heart surgery
>Date: Sat, 27 Jul 2002 16:34:50 EDT
>
>
>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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                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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