Alma (“Jean”) Hager has experienced a lot in her 82 years of life, but she gets to feel like a kid again when she walks through the doors of Atrium Health Levine Children’s to receive care for congenital heart disease.
Jean has a congenital heart defect (CHD), a structural abnormality of the heart that exists from birth. Jean has had a history of heart valve replacements, and she’s a patient of the adult congenital heart disease (ACHD) program at Atrium Health Levine Children’s, where specialized adult congenital cardiologists work in collaboration with experts at Atrium Health Sanger Heart & Vascular Institute to provide lifelong care to those with congenital heart defects.
Managing adult congenital heart disease requires a distinct skill set compared to treating heart disease acquired through aging or lifestyle factors. The emergence of the ACHD field is a testament to improved treatments, allowing children with heart conditions to thrive into adulthood – a reality that was not always possible. The adult congenital heart disease program offers the latest therapies and approaches to help patients like Jean live healthy and fulfilling lives.
“There is hope.”
A Charlotte-area native, Jean’s earliest memory of being in the hospital with ramifications of a CHD was in 1951. She was 10 years old and had a valve in her heart replaced because it wasn't opening, meaning she wasn’t receiving enough blood flow to her body.
“My mom noticed I was finding it difficult for my heart to keep up with my body, like when I was walking to the bus or helping on my family’s farm,” Jean says. “So we had to travel several hours from our home in Huntersville [just outside of Charlotte] to have my first surgery to replace the valve that was closed.”
Jean says she remembers being scared at the hospital because her mom had to travel back and forth to take care of Jean’s baby sister, and she was only able to visit Jean for an hour each day due to visiting hours.
“It felt like I was in the hospital for a long time,” Jean says. “I wished there was a hospital closer to Huntersville at the time that could help me so I wouldn’t have to be so far from home.”
Ten years later, Jean was in the hospital again to have surgery after being in a car accident. Her doctor at that time was Sanger Heart & Vascular Institute’s founder, Dr. Francis Robicsek. He told Jean that she had a hole in her heart that needed to be repaired. Dr. Robicsek replaced Jean’s heart valve with a bio-prosthetic valve. The benefit of this valve is that they are similar in anatomy to human valves, but they eventually need to be replaced due to natural wear.
Jean continued to see Dr. Robicsek over the years for regular checkups and blood work to monitor the valve. Then in 1990, Jean started to feel unwell. She went to Dr. Robicsek, who told her that the valve needed to be replaced. Jean had surgery again and received a mechanical heart valve, which is made from a special type of carbon or titanium and is more durable than a bio-prosthetic valve. Jean continued to be monitored frequently to ensure the valve was working as it should and not causing any blood clots.
When Dr. Robicsek retired from surgery, Jean started to see Dr. Jorge Alegria, adult congenital heart disease specialist at Atrium Health Levine Children’s.
“I feel confident in the care I have received over the years,” Jean says. “Dr. Robicsek took good care of me and working with Dr. Alegria has been wonderful. I trust what he says.”
Lynnette Butler, Jean’s daughter, has been going with Jean to her appointments for several years and says Dr. Alegria has always been a champion for Jean.
“Dr. Alegria encouraged her to share her story so kids with congenital heart defects can know there is hope,” Lynnette says. “My mom has done a lot over the years – she was a cheerleader, she drove a school bus, she worked from the day she turned 16 until she retired in 2014. This is what you can aspire to.”
A change of heart
Specialized medical professionals play a crucial role in the care of those with ACHD, which is where the adult congenital heart disease program comes in. The HEARTest Yard Congenital Heart Center at Atrium Health Levine Children’s offers a separate space for adult patients like Jean to receive specialized and personalized care for ACHD. It also features nearly 25,000 square feet of modern, bright and interactive space for children, plus a dedicated fetal echocardiography lab, 25 patient rooms, and additional technology and advancements to meet patient needs. This enables the Levine Children’s team to provide expert care for patients with CHD from before birth through adulthood.
Jean and Lynnette say these advances in the CHD field are remarkable.
“I have seen the level and nature of care change a lot over the decades,” Jean says. “The care continues to get even better, and it’s incredible that we have it right here in Charlotte, so you don’t have to travel away from home like I did. And the innovation and advancements mean that even if you have a congenital heart defect, you can live into your 80s and be thriving.”
Jean is indeed thriving. She enjoys having her family close – Lynnette and Jean’s younger daughter, Tiffany, live next door to each other. She gets to spend time with her grandchildren, participates in a fitness program, and is known for her signature pound cake and sourdough bread.
Lynnette says that the care Jean is receiving now is worlds different from what she was going through as a child.
“It’s been exciting to go on this journey with her and see this program continue to grow,” Lynnette says. “Not only in technological advancements, but there’s also help and resources. My mom was on an island when she was younger and going through this. Now there are multiple programs for families and opportunities for education, so you don’t feel like you’re going through it alone.”
Jean says it was a bit peculiar at first to go to a children’s hospital for treatment as an adult. But she is happy to know the program is enabling kids to have a promising future.
“I’m glad they have an opportunity for care that I didn’t have as a child,” Jean says. “I hope they can have as normal of a life as possible with all the options this program provides.”
Learn more about the adult congenital heart disease program at Atrium Health Levine Children’s.
