"Once you cut through the heart it's never the same. It always needs to
be cared for."
Christy Sillman, RN, nurse coordinator for the Adult Congenital Heart Program at Stanford, has a unique connection with her patients -- she too was born with congenital heart disease. (Photo: Business Wire)
That statement from Christy Sillman, RN, 34, is born of experience. A
very personal experience. That's because Sillman was born with
congenital heart disease at a time when these patients weren't expected
to live to adulthood.
Now, as one of the many adult survivors needing lifelong, specialized
treatment for her heart, Sillman brings special insights to her work as
the nurse coordinator for the Adult
Congenital Heart Program at Stanford.
"My patients tell me that they love talking to Christy because not only
is she an exceptional nurse, but she gets it," said George
Lui, MD, medical director of the program and clinical assistant
professor of cardiovascular medicine and pediatric cardiology at the Stanford
University School of Medicine. "They're excited to speak with
someone who has been through it firsthand. Not many programs have this
kind of asset."
The Adult Congenital Heart Program at Stanford, a Lucile
Packard Children's Hospital Stanford and Stanford
Health Care collaboration, brings together the expertise of
pediatric and adult cardiology. "Ninety percent of children born with
congenital heart disease are surviving into adulthood," Lui said.
"Advances in medical and surgical care have created a large population
of adult survivors."
That population now numbers more than one million people in the U.S.,
according to the Adult Congenital Heart Association.
Sillman's story began when she was born in 1980 with tetralogy
of Fallot with pulmonary atresia. It's a life-threatening condition
that includes several defects of the heart, including the absence of the
vessel that carries blood from the heart to the lungs. Doctors told her
parents she would likely survive for only three days. Luckily, a trial
drug helped keep her alive long enough to have a shunt placed, which
allowed blood to flow to the lungs.
After many more treatments and surgeries throughout childhood, she
finally seemed to be in the clear. But things are not always that
straightforward for those born with congenital heart disease.
At age 17, Sillman was told by her doctors that a heart valve was leaky
and needed to be replaced. The surgery was successful, but Sillman
experienced vocal cord paralysis, thwarting hr dreams of studying
acting. "I started to think of a career in health education," Sillman
said. "I liked the idea of helping patients like myself."
A year later, Sillman's pediatric cardiologist told her she was cured,
and would never need to see a cardiologist again. "He told me to have a
nice life," Sillman recalled.
Sillman did just that. She stopped seeing a cardiologist for the next 10
years, became a health educator, went to nursing school, got married in
2006 and decided to have a child.
Although supposedly "cured" of heart disease, Sillman unexpectedly
during her second trimester. Doctors stabilized her and she delivered a
healthy baby boy, but two months after giving birth, she was having
difficulty making it up the stairs. "My doctor told me that I was just
She found an adult congenital heart disease cardiologist who discovered
she was suffering from cardiomyopathy,
a disease of the heart muscle. Sillman was going into heart failure. It
turned out that she wasn't cured - but thankfully, medication and
exercise were successful treatments.
"At that point, my frustration with the medical care of people with
congenital heart defects was elevated," Sillman recalled. "I wouldn't
have been in such bad shape had I gotten the right care earlier. This
motivated me to get more involved."
That involvement was huge. Sillman talked with many people who shared
similar stories, which inspired her to become an advocate, from blogging
to Capitol Hill and more. When a position was available as with the
program at Stanford in 2013, Sillman jumped at the chance and was hired.
"I don't want any teenager to go through what I went through," said
Sillman. "Being told you're cured and finding out that's not really
true? That should never happen."
But it does. Susan Fernandes, the program's director, said it's
estimated that more than 50 percent of adults with congenital heart
disease are not receiving specialized care, and are often lost to
follow-up care beginning in early adolescence.
"It's important to know that we don't cure congenital heart disease,"
said Lui, "Instead, we provide lifelong care that patients like Christy
Sillman certainly appreciates that care, and the ability to pay it
forward through her work and experience. "I really like bringing a
patient's perspective to what I do," Sillman said. "There's nothing
better than getting up in the morning and knowing that your job
perfectly fits your passions."
About Stanford Children's Health and Lucile Packard Children's
Stanford Children's Health, with Lucile Packard Children's Hospital
Stanford at its core, is an internationally recognized leader in
world-class, nurturing care and extraordinary outcomes in every
pediatric and obstetric specialty from the routine to rare, for every
child and pregnant woman. Together with our Stanford
Medicine physicians, nurses, and staff, we deliver this innovative
care and research through partnerships, collaborations, outreach,
specialty clinics and primary care practices at more than 100 locations
in the U.S. western region. As a non-profit, we are committed to
supporting our community - from caring for uninsured or underinsured
kids, homeless teens and pregnant moms, to helping re-establish school
nurse positions in local schools. Learn more about our full range of
preeminent programs and network of care at stanfordchildrens.org,
and on our Healthier,
Happy Lives blog. Join us on Facebook,
Lucile Packard Children's Hospital Stanford is the heart of
Stanford Children's Health, and is one of the nation's top hospitals for
the care of children and expectant mothers. For a decade, we have
received the highest specialty rankings of any Northern California
children's hospital, according to U.S. News & World Report's 2014-15 Best
Children's Hospitals survey, and are the only hospital in Northern
California to receive the national 2013 Leapfrog Group Top
Children's Hospital award for quality and patient care safety.
Discover more at stanfordchildrens.org.
About Stanford Health Care
Stanford Health Care (SHC) seeks to heal humanity through science and
compassion one patient at a time, through its commitment to care,
educate, and discover. Across its health system of inpatient care,
outpatient health centers, medical groups, health plan offerings, care
navigation and virtual care services, Stanford Health Care provides
patients with the very best in health and care through its unique
leading edge and coordinated care approach.
Stanford Health Care is widely recognized for delivering the highest
levels of care and compassion, while also discovering breakthroughs for
treating cancer, heart disease, brain disorders, primary care issues,
and many other conditions. Stanford Health Care and its Stanford
Hospital, along with Stanford Children's Health and the Stanford
University School of Medicine, are committed to delivering Stanford
Medicine excellence to each and every patient and family served. For
more information, visit: www.stanfordhealthcare.org.
Photos/Multimedia Gallery Available: http://www.businesswire.com/multimedia/home/20140827006400/en/
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