Family's hereditary heart condition discovered after her father and two sisters died young

By Deborah Lynn Blumberg, American Heart Association News

Cardiomyopathy survivor DeAnn Bartram (right) with her husband, Greg. (Photo courtesy of DeAnn Bartram)
Cardiomyopathy survivor DeAnn Bartram (right) with her husband, Greg. (Photo courtesy of DeAnn Bartram)

DeAnn Bartram was 16 when her father felt like he had a virus he couldn't shake.

Doctors said he had cardiomyopathy, a condition where the heart muscle can thicken, interfering with normal blood flow. Make a will, they said. Then they recommended he get a heart transplant.

Nicholas Cirino was 37 and owned a landscaping business in Cleveland. He and his wife, Reba, flew to California to wait for a new heart. It took six months. Nicholas lived 14 more years, celebrating birthdays, holidays and other milestones with Reba and their five daughters.

At the time, doctors told DeAnn and her family that her dad's form of cardiomyopathy was rare. He'd probably caught a virus that set it off. They also said it wasn't hereditary.

"So we went on about our lives," said DeAnn.

Nicholas was still alive when DeAnn's sister, Michelle, who was in college studying to become a nurse, kept fainting. Doctors couldn't find anything wrong.

Michelle got married. On her honeymoon, she had more fainting spells. It turned out to be cardiomyopathy.

Michelle started medication and spent time in the hospital on and off being treated for low potassium and heart palpitations. When she got pregnant, doctors feared her heart was too weak to handle it. She opted to continue, delivering a healthy but preterm baby at 29 weeks, with no complications for her either. She later adopted another son.

At 33, Michelle was jogging and one of her sons was biking next to her when she collapsed. She lived for three days on life support before dying.

Doctors checked the four remaining sisters' hearts and found no issues.

Five years later, Gina was cheering on one of her three sons at his middle school track meet. She jogged back to her van to retrieve his water. Upon returning to the track, she collapsed in front of her son. She died immediately at age 40.

DeAnn Bartram (second from right) with her sisters and father. From left: Christa McHale, Joelle Ehrbar, Michelle DiCillo, Gina Benenati, DeAnn and Nicholas Cirino. Michelle, Gina and Nicholas died from a rare type of cardiomyopathy. (Photo courtesy of DeAnn Bartram)
DeAnn Bartram (second from right) with her sisters and father. From left: Christa McHale, Joelle Ehrbar, Michelle DiCillo, Gina Benenati, DeAnn and Nicholas Cirino. Michelle, Gina and Nicholas died from a rare type of cardiomyopathy. (Photo courtesy of DeAnn Bartram)

"Enough's enough!" friend and nurse Stacey Mazzurco told DeAnn. "You guys have to come in to get checked out again."

This time, doctors ran genetic tests on DeAnn and her remaining sisters Joelle and Christa.

DeAnn and Joelle had the gene for arrhythmogenic right ventricular dysplasia, or ARVD. It's a rare form of cardiomyopathy where the right ventricle's heart muscle is replaced by fibrous tissue or fat.

In August 2009, three months after Gina died, DeAnn had a defibrillator implanted in her chest. If her heart beats too fast or too slow, or if it stops, the device will shock it back into a normal rhythm.

"I was very apprehensive," said DeAnn, who was 42, a lifelong runner and otherwise perfectly healthy. "It really wasn't that hard to get used to. I'm so thankful to have it."

Still, it's created some challenges.

One day, she was teaching a seventh-grade language arts class when something started beeping. She figured it was a student's phone. Then she realized the noise was coming from her chest. Her device needed a new battery.

Now 54, DeAnn has had one replacement. She also takes a beta blocker. The bigger issue is that she's been told not to run for fear of it triggering an arrhythmia. That loss weighs heavy on her. She met her husband because of running and her children received running scholarships. Although she keeps active with walking, biking, hiking and doing yoga, she misses running.

Recently, DeAnn went on an uphill hike in the Dominican Republic. Her smartwatch showed her heart rate climbing. The lack of faith in her heart was balanced out by how much she trusts her defibrillator.

"I'm very thankful I have this device," she said. "It's like an insurance plan. I'm in the best hands with it. It's a miracle they came up with these and they work. I wish my sisters had them because they would be here today."

Before DeAnn's athletic children had the genetic testing as well, she worried about them. Did they have the gene mutation, too? All three were tested as adults. They happened to be visiting when the results arrived.

None had the gene.

"It was a miracle," DeAnn said.

The Bartram family, from left: Son Nicholas, daughter Reba, son Vincent, daughter-in-law Giovanna, DeAnn and Greg. (Photo courtesy of DeAnn Bartram)
The Bartram family, from left: Son Nicholas, daughter Reba, son Vincent, daughter-in-law Giovanna, DeAnn and Greg. (Photo courtesy of DeAnn Bartram)

She encourages people not to ignore changes in their health and to see their doctor. "Especially women, but people in general, tend to trudge on and think we're fine even if there are some red flags. Take those next steps to rule things out. Take care of you. You've only got one you."

Stories From the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.

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