From the moment they learned their daughter Julie had a rare heart defect, Rosemary and Bill Mroz decided to focus on the positive.
Relying on faith, family, friends―and good doctors―they watched Julie grow and thrive, even as they kept an eye on her heart condition.
Julie Palma is now 35, married and the mother of a toddler. She approaches life as an adult congenital heart defect survivor with the same blend of positive attitude and medical savvy she learned from her parents. Dealing with medications, surgery and activity restrictions has been tough at times, but those challenges help her appreciate what she has.
“You feel like life is more precious,” she said.
Sitting in her home in Hudsonville, Michigan, as her 18-month-old daughter, Kennedy, toddled about, Palma talked about life with a heart defect.
She shared her story recently at Heart to Heart: Where You Live, a regional conference of the Adult Congenital Heart Association in Grand Rapids, Michigan. The conference included discussions with specialists from the Congenital Heart Center at Spectrum Health Helen DeVos Children’s Hospital.
The number of children with congenital heart defects has grown steadily in the past few decades, with improvements in treatments, medications and surgical techniques.
Now, 1.8 million Americans older than 18 have congenital heart disease, said Marcus Haw, MBBS, FRCS, the chief of pediatric cardiothoracic surgery at Helen DeVos Children’s Hospital and co-director of its Congenital Heart Center.
“We’ve got more and more survivors coming into that age group,” Dr. Haw said. “And mathematically, we know it’s going to increase until about 2035 to 2040.”
Congenital heart doctors see a growing need to provide care and outreach to adult survivors, to make sure they get the monitoring and treatment from specialists trained to address their unique medical needs.
The Adult Congenital Heart Association works to promote education, research and advocacy for patients as they grow to adulthood, said Marti Phillips, an ambassador for the organization.
“A lot of congenital heart disease patients have had their parents taking care of everything for them medically,” Phillips said. “They need to learn to be responsible for their own care.”
Julie Palma “is a survivor and a good example of good practice,” Dr. Haw said.
1 in 10,000
From birth, Palma’s heart lacked the valve that controls blood flow from the heart’s upper right chamber to the lower right chamber. The condition, called tricuspid atresia, prevents blood from flowing to the lungs to be oxygenated. The birth defect occurs in 1 in every 10,000 births, according to the Centers for Disease Control and Prevention.
At 6 months old, Palma underwent surgery to get a shunt to direct blood flow to her lungs from the vessel that led from her body to her heart.
In a way, it led us to (our daughter) Kennedy. Kennedy is our greatest blessing.
She did well for several years, but when she turned 4, her parents noticed their active preschooler slowing down. After Palma struggled to climb a slide one day, her mom asked the doctors if it was time for the next step.
Palma underwent surgery again, this time to connect the main pulmonary artery to the vessel returning oxygen-poor blood from the lower part of the body. She bounced back quickly.
“A couple of weeks later, she was doing cartwheels in the yard,” said her mom, Rosemary Mroz. “She had so much energy.”
Throughout childhood and her teen years, Palma lived with some restrictions. She couldn’t do contact sports. But she found plenty of activities she could do.
She became a cheerleader. She played the clarinet in the high school band.
“We always approached it, right from the beginning, that we were going to make it through it,” Mroz said. “God gave her to us, and you just love her as you love any other child.”
In Palma’s senior year at Grand Valley State University, she felt her energy wane.
“I was getting very tired,” she said. “I’d take naps a lot. I think there was a bluing of the bottom of my legs.”
At a checkup, her doctors noticed her heart was enlarging.
In 2003 she underwent surgery to get a pig valve implanted.
She continued to get follow-up care. It became easier to monitor her condition when the Congenital Heart Center formed at Helen DeVos Children’s Hospital after Dr. Haw’s arrival in Grand Rapids in 2012. The center is led by Dr. Haw and pediatric cardiologist Joseph Vettukattil, MD, both internationally known congenital heart specialists who came from England.
Three years ago, Dr. Haw replaced Palma’s artificial valve with a bovine―or cow―valve. She also has had several ablation procedures to correct heart rhythm problems.
Through all the procedures, she drew on support from her husband, Dan, her parents, and her siblings, Jennifer and Jonathan.
She had moments where breathing was tough, when she struggled to take even a few steps as she recovered from surgery. But despite the scary moments, her journey has come with blessings, too.
Concerned about a high-risk pregnancy, Julie and Dan Palma decided to adopt instead. And 18 months ago, they welcomed a beautiful little newborn girl, Kennedy, into their lives.
“In a way, (the heart defect) led us to Kennedy,” Palma said. “Kennedy is our greatest blessing and we probably wouldn’t have her if I didn’t have this issue, because it led us to adoption.”
When she thinks of the future, Palma looks forward to treasuring everyday moments: “Watching Kennedy grow up and just experiencing life. I love spending every moment I can with her.”
Her mother marvels at Palma’s resilience, particularly how she has faced her medical challenges.
“She’s always done her thing,” Mroz said. “And she is one of the strongest people I have ever known.”
“Obviously, I wouldn’t wish this on anyone,” Palma said. “But I’m grateful for the journey. You don’t take life for granted. Every day is a gift, for sure.”