February is Heart Month, and here's how you can learn more about
the most common birth defect -- and how you can help.
The Children's Heart Foundation
has published a free e-book for parents.
It's My Heart describes in plain language
(English and Spanish) the most common types of heart problems
and the tests, surgical procedures, and treatments you should know
Jack Van Pelt was born on Oct. 10, 1997, with 10 fingers, 10
toes and light blond hair. He also was bright green, a telltale
sign that his heart wasn't pumping enough oxygenated blood to his
"He looked like the little Sprout on the Green Giant cans," his
mom, Megan, remembers.
Jack's condition wasn't a surprise -- doctors found a heart
defect during an ultrasound -- but it still jarred the Van Pelts,
first-time parents in their early twenties.
"You spend all these months imagining what your baby is going to
look like that first moment," Van Pelt remembers. "No matter what
the doctors tell you, you're not prepared for something like
Jack was born with his pulmonary and aortic valves reversed,
five holes in his heart wall and his organs starved for oxygen. He
was whisked out of the delivery room before his parents even had a
chance to hold him and spent two months in the neonatal intensive
care unit at Children's Memorial Hospital in Chicago before he was
strong enough to undergo surgery.
But when he came out of the 11-hour procedure, he was pink.
"You worry about a lot of things when you're pregnant,
especially when you're as young as we were," says Megan, now the
board president of the Children's Heart Foundation, a national
organization dedicated to supporting pediatric heart research. "But
heart failure? Not one of them."
Maybe it should be: Congenital heart problems are the most
common birth defect, affecting about 1 in 100 newborns. More than
half of them will require at least one invasive procedure and not
all are as lucky as Jack Van Pelt.
According to the Children's Heart Foundation, one in three
deaths related to birth defects is attributable to heart
Healthy - then not
Heart problems don't always show up right away. Tiana Tillman
was given a clean bill of health when she was born in February 2008
after what her mother, Jackie, calls the easiest of her three
pregnancies. Charles Tillman had just wrapped up his sixth season
as the Chicago Bears' starting left cornerback, and the couple was
looking forward to spending the offseason with their newborn.
But in mid-May, 3-month-old Tiana became fussy. Thinking she was
coming down with a cold, Jackie took Tiana to the pediatrician, who
said to keep an eye on her overnight. That night, Tiana struggled
to breathe, stopped eating and was making grunting sounds. After an
ecocardiogram at a Lake Forest emergency room showed her heart
functioning at about 8 percent, she was airlifted to Children's
Memorial Hospital in Chicago, where doctors put her on a ventilator
and began a drug regimen to aid her failing heart.
Within 48 hours, Tiana Tillman had gone from healthy to not.
"We were blindsided," Jackie Tillman says. "I went from
thinking, at worst, that she had a cold to doctors telling me she
The diagnosis was dilated cardiomyopathy: Her heart was too big
and too weak. The drugs stopped working and in late June, Tiana was
placed on a heart-and-lung machine. It kept her alive but also
required her to be intubated and paralyzed, which can weaken the
lungs and raise the risk of infection.
"I remember sitting there, watching her; she didn't move, she
didn't smile, she didn't do anything," Tillman says. "Those weeks
were the hardest."
Bypass is also not a long-term solution, and Tiana's time was
running out. She had been moved to the top of the transplant list,
but doctors weren't sure her heart would last long enough. So they
recommended the Berlin Heart, a less invasive and more sustainable
alternative to the bypass machine. Developed in Germany almost 20
years ago, it is not FDA-approved, but has been used on a
case-by-case basis in the United States since 2000.
Tiana was the first child in Illinois to receive the Berlin
Heart, and the six-hour procedure performed at Children's Memorial
went smoothly. Quarter-sized pockmarks on her stomach are permanent
reminders of the device that kept her alive while waiting for the
transplant, which became available in August.
She faces another heart transplant-the longest anyone has spent
on a donor heart is 20 years-and a lifetime of anti-rejection
drugs. But she turns 2 this month, a birthday her parents weren't
sure she'd see.
"Looking back now, I can see how close we came to losing her,"
Tillman says. "In that moment, it's hard to believe your child is
that sick, but every day now, we know we're lucky."
Searching for answers
The heart ranks low among medical mysteries. The basics of the
circulatory system were mapped out back in the 1600s, and today we
have Pacemakers and artificial valves and drugs that do everything
from lowering cholesterol to controlling heartbeats.
But when little hearts stop working the way they're supposed to,
doctors often have more questions than answers.
Some defects are genetic. Some are caused by viruses. Still
others are just developmental quirks, the result of a crossed wire
in early pregnancy that leaves a hole unclosed, or one valve where
there ought to be two. Most cases go into the books labeled
"idiopathic," a medical shrug of the shoulders.
"(Heart defects) are not an all-or-none phenomenon, and each
patient is different from the next," says Dr. Sunjay Kaushal, Tiana
Tillman's surgeon at Children's Memorial.
This range of causes and symptoms makes it hard to get a
big-picture view of cardiac problems, he says, and even harder to
do broad studies, secure funding and track results.
Of the nearly $3 billion the National Heart, Lung and Blood
Institute spent on cardiac research in fiscal year 2008, only 7
percent went to studies focused on pediatric heart problems.
Neither the Van Pelts nor the Tillmans have clear answers to why
their children's hearts failed. But both families are working to
Leaving the cardiac floor of Children's Memorial 12 years ago,
Van Pelt picked up a brochure for the Children's Heart Foundation.
The fledgling organization was just a year old, founded by a
Winnetka mom whose 8-year-old son had died of heart failure.
The foundation now has five regional chapters nationwide. As
president, Van Pelt oversees research grants and lobbying efforts,
and heads fundraising and awareness campaigns. To date, the
foundation has donated more than $3.6 million in seed money to
researchers, many of whom have gone on to get federal funding.
"You're so thankful to be coming home with your child because
you know so many people aren't," Van Pelt says. "We wanted to give
The Tillmans were no stranger to charitable work before Tiana's
illness. The couple had started a foundation in 2005 to support
inner-city education, and Charles was nominated in 2007 for the
Walter Payton Man of the Year award, which recognizes NFL players
who have done extensive charity work.
But after Tiana's transplant, the Tillmans refocused their
efforts. The Cornerstone Foundation now helps families do
things like pay bills or find temporary housing, and the couple is
also unveiling a locker at Children's Memorial this month stocked
with laptops, video games and DVDs. And in October, the Tillmans
spoke in Washington, D.C., to lawmakers about the need for FDA
approval for the Berlin Heart.
"Getting the word out-and getting the money to follow it-is how
we can make a difference," Van Pelt says. "Awareness is half the
If that's true, then the other half is being waged in leading
medical centers and research labs like Children's Memorial.
Prenatal screenings are far more accurate than even a decade ago,
and research like Kaushal's, which explores using cardiac stem
cells to treat certain defects, is opening new treatment
"We understand things now … that we never could have
anticipated, and we're perfecting surgeries that didn't even exist
a few decades ago," Kaushal says. "Ten years ago, we were just
trying to keep these kids alive."
One of those kids was Jack Van Pelt, who today is a wiry,
freckled 12-year-old, small for his age but doing well. He'll still
need an aortic valve replacement and struggles with short-term
memory loss and attention deficit disorder, likely effects of the
time he spent on cardiopulmonary bypass, which can restrict blood
flow to the brain.
But he made the sixth-grade basketball team this winter, and his
parents bought him a set of golf clubs to substitute for the
contact sports he can't risk playing.
"We were lucky; a lot families aren't, and that's why we've
gotten so involved," Van Pelt says. "Doctors say to me, 'If we knew
then what we know now…' So my thing is, let's know now. Let's not
have to say that in 10 years."
See more of Liz's stories here.
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