Lindsey Pietrzyk is more than a registered nurse for pediatric surgery at Spectrum Health. She is a patient herself.

Lindsey grew up in the suburbs of Chicago. It was there, at the start of her sophomore year of high school, that doctors diagnosed her with hypertrophic cardiomyopathy.

Hypertrophic cardiomyopathy is a genetic heart condition that causes the heart muscle to thicken, which can cause problems with pumping blood throughout your body.

This condition is as common as Type I diabetes is in kids, affecting as many as one in every 300 people. It is also one of the most common causes of sudden death in the young, a rare but devastating complication of the condition.

Lindsey calls her diagnosis lucky.

“I really feel fate was at play,” she said of the whirlwind of events that led to her diagnosis. With her regular pediatrician out of town, she had to see a new doctor. This doctor found a heart murmur, refusing to sign her sports participation form until she consulted with a cardiologist.

After running a slew of tests, the cardiologist diagnosed Lindsey with hypertrophic cardiomyopathy, which proved to be baffling since the condition wasn’t commonly diagnosed in children at the time.

‘I felt like a science experiment’

She soon quit her soccer team, had an internal defibrillator implanted, and prepared herself for living with a condition many people didn’t understand.

“My school nurse would always freak out,” Lindsey said, discussing the difficulties she encountered throughout her school years before awareness about the condition spread.

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‘Beyond HCM’

From its start in 2012, growing from less than 200 patients to now 800, the hypertrophic cardiomyopathy team has been devoted to offering “frontline, quality care and research,” Dr. McNamara said.

The most important piece of what they do, “is to educate. Not just the medical community, but the entire community.”

The team advocates for all those living with hypertrophic cardiomyopathy.

“I felt like a science experiment up until this point,” she said, explaining that the care she received as a teen is not like the care she receives today.

“They didn’t know how to approach it because it was so new (to them),” she said.

‘Very treatable’

Richard McNamara, MD, an interventional cardiologist at Spectrum Health, said hypertrophic cardiomyopathy is a relatively newer disease. He labels the condition “remarkable,” in that it has a huge variability in its symptoms.

“One disease, but many faces,” Dr. McNamara said. “Symptoms vary from none to sudden cardiac death and everything in between.”

Despite this, he’s confident there’s hope.

“You’re going to be fine,” he said, sharing that hypertrophic cardiomyopathy is better understood today and has more treatment options available than ever before.

Like Lindsey’s diagnosis, her discovery of the Spectrum Health Hypertrophic Cardiomyopathy Program came as a surprise.

“I found Mac on a fluke,” she said of Dr. McNamara. When moving to Michigan she knew she would need a new cardiologist to manage her care.

So she “just Googled it.”

‘The whole spectrum’

David Fermin, MD, took Lindsey into his care when she and her husband, Ed, decided to grow their family.

Dr. Fermin, a cardiologist who directs the hypertrophic cardiomyopathy program and specializes in heart conditions and their effect on pregnancy, led the charge when Lindsey became pregnant with her now 2-year-old daughter, Nora.

The program’s team is made up of adult and pediatric care, “so it really covers the whole spectrum, before birth and onward,” Dr. Fermin said.

“What are the risks for mom and baby?” is the question Dr. Fermin and his team answer before the baby is delivered—and ideally even before the patient considers pregnancy.

Spectrum Health has a whole team—made up of cardiologists, anesthesiologists, geneticists, maternal-fetal medicine specialists and obstetric nurses—dedicated to counseling women and making delivery and care plans well ahead of time for these complex situations.

The team has the goal of “wrapping the care around the family,” Dr. McNamara said, with an emphasis on extending care to the children of patients. They give each parent and child multiple providers’ opinions from the start.

‘Less scary’

Lindsey, Ed and Nora welcomed their second child, Dylan, to their family in August.

Although genetic testing revealed Nora has the gene for hypertrophic cardiomyopathy and Dylan has an appointment to be tested, Lindsey and Ed have peace of mind.

“I’ve lived with this for over half of my life,” Lindsey said. “By doing so, I have learned the condition doesn’t prevent a fulfilling and relatively normal life. Knowing that makes the fate of my children’s diagnoses less scary.”

Having the Spectrum Health hypertrophic cardiomyopathy team supporting them fills the Pietrzyks with confidence their children will remain healthy.

“It’s important to know just because you can’t see our condition, doesn’t mean we don’t need care and support,” Lindsey said.