Nurse coordinator at Stanford’s Adult Congenital Heart Program has the same disease as those she cares for

* Christy Sillman, RN, brings extraordinary personal experience to her work

(STANFORD, Calif.) – “Once you cut through the heart it’s never the same. It always needs to be cared for.”

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 over a 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 her 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 developed arrhythmias 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 nervous.”

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 she wasn’t cured at all. 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 need.”

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.”