Maggie B. doesn’t look like the average Cincinnati Children’s Hospital Medical Center patient.

For starters, she’s 32 years old. She first started visiting for medical care when she was just six months old and needed surgery to repair a heart defect she was born with — atrioventricular septal defect, or AVSD.

Three decades later, she’s still seeing specialists at Cincinnati Children’s Heart Institute to treat and manage her congenital heart disease – and there’s no better place for her to be.

Congenital heart disease care doesn’t end when a child becomes an adult. Cincinnati Children’s is one of a handful of medical centers in the United States to offer comprehensive congenital heart disease services for adults, working through the Heart Institute’s Adult Congenital Heart Disease (ACHD) Program. Cincinnati Children’s annual heart ball, scheduled for Feb. 24, 2018, will raise money and awareness for the ACHD program, so patients like Maggie can receive continuing care as adults.

And adult patients have much better odds of long-term survival when they receive care from congenital heart specialists. That survival benefit is even greater if they need surgery.  Research shows that adult congenital patients undergoing heart surgery in children’s hospitals  with congenital heart disease expertise are three times less likely to die compared with adult-oriented centers.

That’s why Cincinnati Children’s has built its Adult Congenital Heart Disease Program. Andrew Redington, M.D., executive co-director of the Heart Institute and chief of pediatric cardiology, explains, "Here you have the whole package – the surgeons, the nursing team, the intensive care unit specialists – all of whom work with congenital heart problems every day. If you want people trained specifically in managing congenital heart disease, a children’s hospital with this kind of expertise is the best place to go."

In 2016, Cincinnati Children’s received Comprehensive Care Center accreditation from the Adult Congenital Heart Association (ACHA), making it one of 11 such centers in the United States and one of just three housed in a children’s medical center.

"This was hugely celebrated," Redington said. "The key thing about this is that before accreditation, neither patients nor caregivers could be expected to know where to go for treatment. Having this credential gives patients and caregivers the knowledge that this is one of the best places in the country for them to receive care."

The need grows annually. Less than 20 percent of adults born with a heart defect are estimated to be receiving the specialist heart care they need from a cardiologist trained to manage congenital conditions. Such patients require "lifelong expert surveillance to avoid complications such as arrhythmia, heart failure, infection, stroke or premature death."

In a sense, the need for the adult program can be viewed as a testament to the success of innovations in congenital heart disease management. Gruschen Veldtman, FRCP, MBChB, director of the Adult Congenital Heart Disease Program at Cincinnati Children’s, detailed how the mortality rate for children born with heart defects dropped from 30-40 percent in the mid-20th century to one percent today thanks to advances in cardiology. Children born with congenital heart defects are not only expected to survive, but live well into adulthood.

Marty Tomlin, Nurse Practitioner, consults with Gruschen Veldtman, M.D., Director of the Adult Congenital Heart Disease Program.

"An enormous need exists, not only in Cincinnati but across the globe for adult care," Veldtman said. "Children are surviving because of the success of their surgeries and reaching adult life, but now we have an adult population dealing with a new set of issues."

Pediatricians don’t always feel comfortable treating adult patients, Veldtman said, but cardiologists trained in adult heart conditions don’t always have the specialized background needed to handle adults with congenital issues.

"At best, care is scattered and patients are often not getting the best care," Veldtman said. "This is precisely why Cincinnati Children’s developed a program specifically to address the needs of these patients."

Maggie’s story could have unfolded that way if she had been a bit older and missed the current wave of establishing adult care in pediatric centers, or if she had not already been a patient at Cincinnati Children’s, which was at the forefront of such best practices.

In 1986, a pediatrician in Dayton, where Maggie lived with her family, discovered her heart defect when she was just a month old, and sent her to Cincinnati Children’s for her first heart surgery when she was six months old. Her next surgery took place at Cincinnati Children’s three years later in 1989.

After that, Maggie’s life remained blissfully uneventful.

"My childhood was pretty normal," Maggie said. "I wasn’t on any medications, I didn’t have any restrictions and I saw my cardiologist once a year or every two years, whatever he advised. I played sports and kept up with my peers."

When she was 19, however, she came home for summer break after her freshman year of college feeling quite sick. She thought it was just a bad cold, and decided to mention it to her pediatric cardiologist since she already had her regular follow-up visit scheduled for that time.

She didn’t have a cold. Her heart was failing, and the doctor sent her back to Cincinnati Children’s.

"That’s how I got into the adult clinic here," Maggie said. "That was good because I was 19 at the time. I was going to have that conversation with my pediatric cardologist about who and where I should go for treatment as an adult. As it turned out, they had to send me to Cincinnati Children’s because I wasn’t doing well."

That was in 2005, and Cincinnati Children’s was on the cusp of starting its ACHD program. It launched in 2008, right in time for Maggie to fully move from pediatric to adult care.

"We weren’t expecting it to be an issue with my heart because I had been fine up until then," Maggie said. "Actually I had an infection called myocarditis (inflammation of the heart wall). My body was starting to shut down and I spent two weeks in the hospital, mostly in the Cardiac Intensive Care Unit."

As she spent more time in the adult clinic at Cincinnati Children’s, she learned more about her condition and what to expect in the future. In 2012, she started experiencing episodes of atrial flutter, or irregular heartbeats, that led to three hospitalizations, and a cardiac ablation to remove tissue sending incorrect signals that create abnormal heart rhythms. She’s been on medication since that time to help prevent the arrhythmias from returning.

"I don’t mind taking a couple of pills a day to keep me out of the hospital," Maggie said. "I don’t have any mechanical devices at this point, although I could in the future, but if medication keeps my body stable for now, I’m ok with that."

While Maggie’s cardiac episode triggered her move from pediatric to adult care, the Heart Institute has a model in place to help teenaged and young adult patients make a successful transition to adult care. Reaching out to patients in adolescence will make them less likely to fall through the cracks when they reach adulthood and suddenly discover they need treatment. The adult program also addresses health care issues germane to their lives, such as pregnancy

and mental health, and even aging as childhood survivors begin to enter their golden years.

"When we inherit the patient from pediatric care, we work to establish a relationship with them," said Nicole Brown, M.D., attending physician with the ACHD Program and director of the Cardiovascular Genetics Clinic. She’s been caring for Maggie since 2013 and been her primary congenital heart specialist since 2015.

"There is a period of reeducation about their condition and learning how to take ownership of their care. Often they’ve been letting mom and dad handle the issue, but we try to make sure they understand the importance of knowing about their heart condition and the need for long-term follow up."

Maggie found it to be a shock at first. "That was the first time I had to sign off on all of my care decisions because I was of legal age," she said. "It was interesting being so sick and having to make pretty big decisions when I had nothing wrong with me for the previous 16 years. The whole experience was pretty intense because it quickly put me in control of all of my care and my health care decisions."

Maggie also said she didn’t advocate for herself at the time – probably because she felt so sick, but also because "I don’t think I knew I had a voice at that point." But as she grew older and got to know more people in the clinic, she began to see herself as an integral part of her health care team.

"I think here, especially, they want to involve everyone," Maggie said. "I always appreciated being part of the conversation, and I always felt like my views were heard and respected."

Today, Maggie holds a full-time job and is finishing graduate school at Northern Kentucky University. She enjoys spending time with friends and staying active, along with getting involved in education and outreach for the Heart Institute.

She also knows she has a long road ahead medically. She’s been told she will need work on one of her valves, although it might not require open heart surgery depending on the advancement of medical technology and type of repair needed. Regardless, she’ll be a patient at Cincinnati Children’s for life, and that’s just fine with her.

"They want you to live your best life, whatever that looks like," Maggie said. "They want you to fulfill all of your dreams and your goals to the best of your ability, and they’ll help you do it." 

For more information visit CincyHearts.org or call 513.803.2243.