A few decades ago, if a child was diagnosed a serious heart defect it was essentially a death sentence, but thanks to recent advances in neonatal heart surgery, most patients now live well into adulthood. And at least one of them has gone on to care for other people with congenital heart defects.
Christy Sillman, RN, is the nurse coordinator for Stanford’s Adult Congenital Heart Program and is profiled in the most recent issue of Inside Stanford Medicine. Although most people who were treated for heart defects as children don’t require continued surgical interventions as adults, doctors now know that they have other challenges that require ongoing care. Sillman went through this firsthand. After being told as a teenager that she was “cured” and going a decade without care, she learned she was suffering from cardiomyopathy, a deterioration of the heart muscle. From the article:
“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 for patients like herself. When a position was available 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,” Sillman said. “Being told you’re cured and finding out that’s not really true? That should never happen.”
Sillman’s personal experiences are not unusual for a congenital cardiac patient of her generation, but it influenced her professional choices and now, she says, she enjoys bringing “a patient’s perspective” to her work.
Previously: Patient is “living to live instead of living to survive,” thanks to heart repair surgery
Photo by Norbert von der Groeben