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

My daughter had a large VSD, small ASD and PDA.  She is full trisomy 18. She 
had open heart surgery when she was 3 months.  Shen she was born she weighed 
4.5 lbs.  At the time of the operation, she weighed about 6 lbs.  She became 
vent dependent after they put her on a vent from the gtube/fundo surgery they 
performed in June.  Let's see, two surgeries one month apart.  She's still 
living.  The only problems she has is with her breathing.  Now, with her trach, 
her lungs are improving and she is putting on the weight.  The doctor who 
performed the surgery was Dr. Fraser at Texas Children's Hospital in Houston, 
TX.
Annette
  ----- Original Message ----- 
  From: JMSK8RPRO@xxxxxxx 
  To: Tri-Med@xxxxxxxxxxxxx 
  Sent: Saturday, July 27, 2002 3:34 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

Other related posts: