scout with heart condition
Wendie Howland (WAHowland@AOL.COM)
Tue, 15 Sep 1998 12:41:43 EDT
A Scouter writes about a Scout who has had multiple heart operations and isn't
clear on some of the things he's facing..
One of our new scouts (Tyler D.) when he was born was almost immediately
detected with a heart problem. Four days after birth he was up in Boston at
the world renown children's hospital having an operation that cost approx.
$70,000. Since then he has similar operations I believe four or five times.
Tyler was basically born with his heart backwards (simple terms) leaving his
arteries that connect to it all twisted and poorly connected. As he grew he
needed succeeding operations some of which reqd. I believe mylar tubing used
in place of his own arteries. <<end quote
He probably had a condition in which the part of his heart which was supposed
to pump blood to his lungs for oxygen sent it, instead, to his body without
picking up the oxygen he needed. The side which was supposed to pump to his
body sent oxygenated blood back to his lungs... two parallel circuits, body to
body and lungs to lungs, with no connection. Actually a baby with two parallel
circuits like this will die at birth immediately unless he has some connection
between the two sides, so that oxygen can get to the body; this is usually
another defect, a hole in the wall of the heart that separates the two sides.
There are other defects that have the same effect, but this is an easy way to
think about it.
The surgery basically involves making new conduits for the blood flow so it
goes from body to heart to lungs to heart to body, which is the normal
pathway. To do this the surgeon usually uses dacron (not mylar) and/or our
very favorite fabric Gore-tex (really) te, of course, do not grow with the
child, so the surgery has to be repeated a few times until he reaches close to
Tyler requires constant meds. some of which thin
his blood which I believe leads to him having to relieve himself
Two concepts here: You often hear of "blood thinners," which many people
mistakenly think of as being like, gee, paint thinner or extra milk to thin
gravy. That's whay i try to use the correct term, which is "anticoagulant."
Whoa! What's that? Well, if you have all this artificial stuff in your blood
stream, which he does, you are at risk for making clots around it. Clots
floating in blood are bad; they can float to brain and cause strokes, for
example. So medication is given to decrease the blood's ability to coagulate,
to clot. Tyler is probably on an anticoagulant.
However, he has to pee a lot because he is probably on another medication
which is a diuretic, a medication that makes his kidneys make a lot of urine.
This is because a weakened heart delivers less blood than normal to the
kidneys, and they respond by thinking maybe there isn't enough blood in the
body (they don't know he hasn't been hit by a bus and lost a lot of blood), so
they retain a lot of fluid just in case... which puts a strain on the heart.
So the medication (probably Lasix, furosemide) makes the kidneys lose more
fluid in the urine to prevent this overload. It works FAST, so if he has some
at bkfst he'll be peeing like a bandint before his first MB class!
Also he tires very quickly and if on a hike quickly falls to the back so that
often scouts or adults end up caring him. He will never I expect take a
backpack trip or extended bike trip. At camp this summer we got a waiver to
allow him to bring his bike (and helmet) to help hm get around Camp Yawgoog in
Narragansett Council. He started off the week using it but by end of the week
was walking pretty much around the camp.
As you point out, this is a kid who has had a big surgery and has not had a
lot of chances to improve his general conditioning level. As you noticed,
though, he did improve his fitness over the week, as did we all at camp! He
will be able to do this as time goes by, especially if he gets a really good
result from his surgery.
Kids like this are often spoiled, because they are capable of getting sicker
than most kids. However, the biggest challenge is taking a kid who's been made
an invalid unnecessarily, or who had had a great repair and is now cleared for
normal activity... and getting him to change the way he relates to life. We
camp with a kid like this.... he was so used to crying to get his way, not
taking his share of the load, not doing a dam' thing he didn;t feel like doing
because he never had to before, it was a major shock to his system to get a
full activity clearance from his surgeon, "See ya later, kid, you're all
fixed, have a good life!" and be expected to carry his weight in the troop.
It will be important for you NOT to make assumptions about this kid's
permanent disability levels, because unless you have it from his
surgeon/pediatric cardiologist, you can't know that he'll never be able to
swim to do the 1st class req. He might very well be able to next year.. and
granting him a waiver now without knowing the facts or giving him time might
reinforce his helplessness. Over time, he might become fit enough to do a LOT
more than he can now. He will have checkups at least every year, maybe more
often. Ask his parents to take the BSA handbook, some MB books, to the surgeon
or cardiologist for review. S/he might well give Tyler clearance to pursue a
lot more than you're presently assuming.
Let us know how it all turns out..
SA T44 Pocasset MA
Cape Cod & Islands Council
Abake MiSaNaKi Lodge #393
NSJ 1997 Nat'l Health & Safety
I useta be an Eagle...
'The staff is old and feeble, and we can sing no more,
So we're getting out of Gilwell while we can!'
Terry Howerton Sakima Group, Inc. SCOUTER Magazine Kansas City