Julie
 Julie
was born with three defects: single ventricle, transposition of the great
arteries, and pulmonary stenosis. This was diagnosed at three months;
until then it was thought that she had "merely" a VSD.At 18
months she had a Blalock-Taussig shunt, done in Toronto by Dr. Mustard,
who has a different operation named after himself. The shunt worked so
well that for many years Julie was in quite good health. Other than
learning to self-pace herself with sports, and getting antibiotics for
dental checkups, she led a pretty normal life.
By age 12, though, she was beginning to tire very easily, and she
underwent a Fontan procedure. This procedure converted her three chambers
to two chambers -- a big help, since it prevents the newly oxygenated
blood from mixing with the "old" blood. The surgery was fairly
new at the time, and she was only the tenth patient to get one at our
children's hospital. A few days later a pacemaker was implanted, which
operates on demand if the heart rate gets too low. Several months later, a
leak was discovered in her new "plumbing", and she had another
operation to repair that. That was a stressful year, one we'd all like to
forget.
Some children apparently are very bothered by the surgical scars, but
Julie seemed to take it in stride, just always has chosen higher-necked
clothing that covers most of it. The hardest item was bathing suits, so
she usually wore shorts and a T-shirt for swimming.
A year after the Fontan came more bad news: she had to wear a body
brace for a year (16 hours a day) for scoliosis; I don't know if it's
true, but the orthopedic physician said that CHD patients are more prone
to scoliosis than the general public.
Then followed 6-7 years of good health, for which we're very grateful.
No medications except dental antibiotics, and just an annual cardiac
checkup. She did tire more easily than most people, slept longer, and
often took an afternoon nap, but many people who knew her (e.g. teachers)
weren't even aware that she had a health problem.
Three years ago Julie started to get bouts of Atrial flutter, which
we've since learned is a common aftermath of the Fontan procedure (as it
was done back in 1984).She developed an Atrial thrombus, and has since
been taking Coumadin to prevent that (the thrombus seems to have dissolved
now). She also takes Digoxin to try to prevent the flutter. At first the
arrhythmia incidents were about every six months, but last year started
coming about once a month. Each time it happens, Julie checks into the
nearest emergency room (in four different cities so far) and gets
cardioverted. The procedure takes anywhere from several hours, to an
overnight stay in the hospital. Because she doesn't know when or where it
will strike, it's become quite disruptive. She had a radio frequency
cardiac ablation done, which had a chance of helping, but it unfortunately
didn't. So now it's back to trying new medications, hoping one will keep
the episodes to once or twice a year.
But, to give hope to parents of young children, Julie's led a very
active and full life all along. She's kind of a math genius, and has won
many state contests through the years. She was one of about 25 high school
students nationally chosen to train with the U.S. Math Olympiad team (one
year at West Point, one year at Annapolis, three weeks of intensive
training each time). She spent five months studying Math in Budapest
(with, fortunately, no health problems). Besides being a great student
(Phi Beta Kappa, summa cum laude, all that), she's an excellent musician,
and has played the cello since age 8.(Her cardiologist, a violinist
himself, recommended that as being a good orchestral instrument, given her
condition -- it doesn't require the lung power that a wind or brass
instrument does, and isn't as tiring to hold as the violin or viola.)
Julie loves animals, especially ferrets (she had one for 8 years, recently
got two babies).
Best of all, Julie is a wonderful person : sensitive, caring, sweet,
modest (she would never be bragging the way I, her mother, have been!),
great sense of humor, very creative. She's always been mature beyond her
years, and I feel that is in part due to her heart condition, as is her
compassion for others with problems. She's volunteered since her teen
years with elderly women, and they all love her. Before her Fontan
procedure, while I was almost numb with fear at the risks, she was the one
keeping up MY morale.
Anyway, we're grateful that Julie wasn't born ten years earlier, when
nothing like the Fontan procedure would have been available in time,
because she probably wouldn't still be with us. We're hoping that
continuing research will result in ways to control the flutter, and to
combat other future problems she may run into as a result of her
"strangely-plumbed" heart.
Les & Arlyn Kerr
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