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At birth, Cristina Civetta was diagnosed with pulmonary atresia and a hypoplastic right ventricle. She says her four-decade journey with congenital heart disease gives her reason to savor every day. (Photo courtesy of Cristina Civetta)

Some people dread entering middle age. Cristina Civetta welcomes it. As a congenital heart disease survivor, she feels lucky to be alive at 41.

Cristina’s medical journey mirrors that of many adults born with heart defects: The challenges don’t disappear, they change. Navigating each stage becomes an act of resilience, she said, and a reason to savor each day. 

“People always say they’ve never met anyone who celebrates birthdays and anniversaries like I do,” said Cristina, a real estate broker and event producer in New York. “Every year that I get is a year longer than I was supposed to be alive.”

Understanding that mindset means going back to the beginning when doctors fought for her survival. Hours after she was born, Cristina began turning blue. Her tiny body was in heart failure.

She was diagnosed with pulmonary atresia and a hypoplastic right ventricle. The combination of defects meant that the pumping chamber on her heart’s right side was underdeveloped and was limiting blood flow to the lungs. Her body simply couldn’t get enough oxygen to where it needed to go.

Doctors acted as quickly as they could, she said, with what she calls “1980s technology.” At 18 hours old, she had her first operation. Surgeons implanted a shunt to improve blood flow.

The ordeal stunned her mother, who had a healthy pregnancy and was excited to welcome her third child and first daughter.

Cristina was allowed to go home after a month in the hospital. But complications continued. Months later, she went into heart failure again and had her second surgery to repair the pulmonary atresia, at the Mayo Clinic in Minnesota, far from her New York home. She spent another month in the hospital before returning home.

At 14 months, she went into heart failure again and her lungs were retaining fluid. As her condition worsened, she was transferred back to the Mayo Clinic and given last rites in case she didn’t survive. After a third surgery to close the space between her lungs and chest wall, she began to thrive.

But her body remained fragile. She and her mother spent winters in Florida, because she couldn’t tolerate the cold back home.

Before she had even turned 2, Cristina underwent three surgeries to address heart failure. (Photo courtesy of Cristina Civetta)

“My heart made things complicated for everyone in my family,” she said. “My brothers handled so many disruptions and were always told, ‘Be careful with your sister.’ But I, of course, never listened and was always a daredevil.”

School came with new challenges. She missed classes for medical appointments and wore bulky heart monitors for weeks at a time. At 13, she began experiencing shortness of breath and underwent surgery to get a stent to increase blood flow. 

By seventh grade, she was self-conscious about scars from her procedures on her chest and back. While friends consoled her, her mother would sew extra fabric in dance dresses to cover the marks.

“Now my scars are warrior marks that show my journey,” she said.

Her 20s were hard. At 22, she began passing out and received a pacemaker. At 28, she needed another. A year later, she had open-heart surgery again. 

“All my energy went into being in fighter mode,” she said. “I felt like a boxer going into the ring.”

Recovery became a reset. She started protecting her peace, taking an hour each morning for herself and setting boundaries, including not turning small problems into big ones. She also refused to use stress as an excuse for unhealthy behavior, such as overeating, drinking or being inactive.

She also learned to create the life she wanted. She remembers asking her doctor: “Can I run a marathon? Can I get pregnant?” His answer: “Whatever you want, I am going to help you get there.”

She married at 34, a milestone she once doubted she would achieve. Today, she describes her life as active and full, complete with impromptu dance parties with her husband, Ed Scheetz.

As an adult, Cristina learned to create the life she wanted — and at age 34, she married Ed Sheetz. (Photo courtesy of Cristina Civetta)

Cristina still relies on follow-up cardiac care and said the vigilance of being a congenital heart disease survivor never completely fades.

“You do have heightened awareness and fear for what could go wrong,” she said. “Even simple illnesses could mean more for me.”

The COVID-19 pandemic intensified that anxiety. Any symptoms triggered contingency plans with her health care team. Now, she sees her cardiologist four times a year, takes medication and expects to get a new pacemaker in a year. If anything feels “off,” she calls in quickly and even has the cardiologist’s cell phone number. 

That self-advocacy is now part of her mission. She credits the great health care professionals she had throughout her life for keeping her healthy and wants other families to feel less alone.

“I hope I’m alive until I’m 110,” she said. “I’ll dedicate my life to making the most positive difference I can. If I can help one child not be afraid or one mom know that congenital heart disease isn’t a death sentence, then that will be my legacy. I want to show them you can have a full life … and you deserve a full life.”