Thrive by IU Health

May 20, 2021

A Program With Heart: Serving Adults With Congenital Heart Disease

IU Health Methodist Hospital

A Program With Heart: Serving Adults With Congenital Heart Disease

For most people, the phrase “congenital heart disease” likely brings to mind babies and small children. But Leah Smith is living proof that congenital heart disease affects adults, too – and that treating it is a marathon, not a sprint.

According to the Adult Congenital Heart Association (ACHA), nearly 2 million American adults live with congenital heart disease. For 30-year-old Leah, her congenital heart care required two miraculous heart transplants, one when she was 11 days old and another when she was 22.

While her journey has occasionally been difficult, Leah says it has been eased considerably by the holistic and collaborative approach that IU Health has taken to adult congenital heart disease. With Indiana’s only adult congenital heart disease program recognized by the ACHA, IU Health has forged a care environment between physicians at Riley Hospital for Children at IU Health and IU Health Methodist Hospital to provide a smooth transition for patients who are growing into adulthood and still requiring specialized care for their cardiac issues.

Speaking from experience, Leah says that transition is key to long-term survival. She worries about patients – especially young adults – who might not realize how important it is to continue to receive care after they reach adulthood.

As Director of the IU Health Adult Congenital Heart Disease Program, Stephen Cook, MD, FACC, echoes Leah’s concerns, saying a key mission of the program is to avoid gaps in care. “Young patients, not unlike other teens, think they are invincible, that nothing can go wrong,” he said. “That’s often when patients can be lost to care and the ‘wheels can really come off’.”

Larry Markham, MD, FAAP, FACC and director of Pediatric Cardiology and co-director of the Cardiovascular Service Line at Riley Hospital for Children at IU Health, added, “This program is allowing kids to grow into adulthood knowing that they will be cared for throughout their life by a team that understands congenital heart disease.”

The only center in Indiana where patient-centered care for adults with congenital heart disease is provided by board-certified adult congenital cardiologists, the IU Health Adult Congenital Heart Disease Program complements its medical expertise with compassionate care. “That is the difference with IU Health,” Leah said. “The people they hire and the people who choose to work at IU Health are people who are deeply connected with their hearts to helping the patient.”

Leah’s mother, Joan Smith, adds, “One thing Leah used to say all the time is how special it was that the staff not only became part of our family, but they made her a part of theirs.”

That level of care and compassion has been key for Leah, who says dealing with congenital heart disease – and, in her case, two transplants – can be overwhelming. Knowing that there are people who understand your unique challenges, she said, and who walk with you through the good days and bad, and always have an encouraging word for you, makes all the difference.

“I know it stretches everywhere in the IU Health network,” she said. “They are just caring people.”

If you would like to financially support patients like Leah and the IU Health Adult Congenital Heart Disease Program, please contact Ashley Strickland, senior development officer at IU Health Foundation. She can be reached by email at astrickland1@iuhealth.org or by phone at 317.264.9438.

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