Alma (“Jean”) Hager has been through a lot in her 82 years of life, but when she walked through the doors at Atrium Health Levine Children’s to receive treatment for her congenital heart disease, she was transported back to her childhood. It makes me feel like.

Jean has a congenital heart defect (CHD), a structural abnormality of the heart that has been present since birth. Jean has a history of heart valve replacement surgery, and she is also a patient in the Adult Congenital Heart Disease (ACHD) Program at Atrium Health’s Levine Children’s Hospital. In this program, expert adult congenital cardiologists collaborate with experts at Atrium Health Sanger Heart and Vascular Institute to provide lifelong care for people with congenital heart disease.

Managing congenital heart disease in adults requires a different skill set than treating heart disease acquired through age and lifestyle factors. The emergence of the ACHD field is evidence that treatments have improved and children with heart disease can now thrive into adulthood, but this was not always possible. The Adult Congenital Heart Disease Program provides the latest treatments and approaches to help patients like Jean live healthy, fulfilling lives.

“There is hope.”

Jean, a native of the Charlotte area, had her first memory of being hospitalized due to CHD in 1951. She had a replacement surgery when she was 10 years old because a valve in her heart wouldn’t open and she wasn’t getting enough nutrition. Blood flowing through her body.

“My mother noticed that my heart had a hard time keeping up with my body, such as when I was walking to the bus or helping out on the family farm,” Jean says. “So we had to travel several hours from her home in Huntersville.” [just outside of Charlotte] This is my first surgery to replace a valve that has closed. ”

Jean said she remembers being scared at the hospital because her mother had to travel back and forth to care for Jean’s baby sister and could only see Jean for one hour each day due to visiting hours. .

“It felt like I was in the hospital for a long time,” Gene says. “At that time, I wish there was a hospital near Huntersville that could help me so I wouldn’t have to be so far from home.”

Ten years later, Gene was in a car accident and was hospitalized again for surgery. Her doctor at the time was Dr. Francis Robicek, founder of the Sanger Cardiovascular Institute. He tells Jean that there is a hole in her heart that needs to be repaired. Dr. Robicek replaced Gene’s heart valve with a bioprosthetic valve. The advantage of this valve is that the anatomy is similar to the human valve, but it will eventually need to be replaced due to natural wear and tear.

Jean continued to see Dr. Robicek over the years for regular exams and blood tests to monitor her valves. And in 1990, Jean began to feel unwell. She went to Dr. Robicek, who said he needed to replace her valve. Jean underwent surgery again and received a mechanical heart valve, which is made from a special type of carbon or titanium and is more durable than bioprosthetic valves. Jean continued to be monitored frequently to ensure her valves were functioning properly and that no blood clots were forming.

After Dr. Robicek retired as a surgeon, Gene began to regain his sight. Dr. Jorge AlegríaAdult 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. Robicek took good care of me and working with Dr. Alegria was great. I believe what he says.”

Lynette Butler, Gene’s daughter, has accompanied Gene to his medical appointments for several years and says Dr. Alegria has always been Gene’s advocate.

“Dr. Alegria encouraged me to share my story so that children with congenital heart defects know there is hope,” Lynette said. “My mom has done many things over the years. She was a cheerleader, drove a school bus, and worked from the day she turned 16 until she retired in 2014. is something we can aspire to.”

change of heart

Specialist medical professionals play a critical role in the care of patients with ACHD, and this is where the Adult Congenital Heart Disease Program comes into play. The HeartTest Yard Congenital Heart Center at Atrium Health Levin Children’s provides another space for adult patients like Gene to receive specialized care. Individualized care for ACHD. It also features approximately 25,000 square feet of modern, bright, and interactive space for children, as well as a dedicated fetal echocardiography lab, 25 patient rooms, and additional technology and advancements to meet patient needs. This will allow the Levine Children’s team to provide specialized care to her CHD patients from prenatal to adulthood.

Jean and Lynette say these advances in the field of CHD are remarkable.

“I have seen the level and nature of care change significantly in recent decades,” says Jean. “Care continues to get better and better, and it’s incredible to have it right here in Charlotte, so you don’t have to travel far from home like I did. And innovation and progress, even innate This means you can live and do well into your 80s even if you have a heart defect.”

Jean is definitely growing. She enjoys having her family nearby. Lynette and Jean’s younger daughter Tiffany lives next door. She spends time with her grandchildren, participates in her fitness program, and is known for her signature pound she cakes and sourdough she breads.

Lynette says the care Jean is receiving now is completely different from what she experienced as a child.

“It’s been so fun to continue this journey with her and watch this program continue to grow,” Lynette says. “There are advances in technology as well as support and resources. My mother was on the island when she was young and had an experience like this. Now there are multiple programs and educational opportunities for families, so it’s easy to be alone. You don’t have to feel like you’re getting over it.”

Jean says that going to a children’s hospital for treatment as an adult was a little unusual at first. However, she is happy to know that the program will provide children with a bright future.

“I’m glad they’re getting the care that I didn’t have when I was growing up,” Jean says. “We hope they can live as normal a life as possible with all the options this program offers.”

For more information, Adult Congenital Heart Disease Program at Atrium Health Levine Children’s.