Adult Congenital Heart Disease Program

Patient Stories | Katie and Adult Congenital Heart Care

Katie's Story: Overcoming Anxiety and Gaining Confidence to Manage Her Own Congenital Heart Disease Care

Katie can’t remember a time when she wasn’t under the care of a heart specialist. 

When she was born, doctors noticed a heart murmur, and Katie was soon diagnosed with an atrial septal defect (ASD)—a hole in the wall that divides the heart’s chambers. 

From birth to age 20, Katie received care at Cincinnati Children’s Heart Institute, including undergoing a heart procedure to repair the hole in 2015.

Even though Katie struggled with anxiety in her younger years, she’d grown comfortable with her team at the Heart Institute. “I was so used to going to the pediatric clinic,” she said. “It became easy.”

But, when Katie turned 18 and needed to start thinking about transitioning to adult care, she began to feel anxious again. 

A Complex Condition

Although atrial septal defects are common and don’t typically cause symptoms in children, they can lead to problems in adulthood if left untreated. They also require regular monitoring.

“A lot of times with congenital heart disease, things happen so slowly over time that patients don’t necessarily notice them or feel like anything’s wrong because their bodies have slowly adapted to it,” said Nicole Brown, MD, medical director of Cincinnati Children’s Adult Care Services and attending physician of our Adult Congenital Heart Disease (ACHD) Program.

In fact, fewer than 20% of adults with congenital heart disease (CHD) in the United States receive the specialist care they need.

“They may feel like they’re cured if they don’t notice anything feels wrong,” Dr. Brown said. “But there are many conditions related to CHD that can develop over time, which is why regular management is so important. It makes it easier for us to anticipate what’s coming and develop a relationship with the patient.”

Research has also shown that children with complex heart problems are at a greater risk for several neurodevelopmental issues, with many needing extra help in areas including development, learning, attention and behavior.

“There’s a pretty high frequency of anxiety and depression among patients with any chronic condition—chronic heart disease included,” Dr. Brown said. 

Katie not only experienced anxiety, but she was also diagnosed with attention-deficit/hyperactivity disorder (ADHD) and dyslexia when she was young. “Understanding things was hard sometimes,” she said, noting that although she had an individualized education program (IEP) growing up, school was often still a struggle. “I was in speech therapy until I was 17.”

In addition, Katie was born a twin, which highlighted growth and developmental differences—and Katie’s heart condition. Despite having a mild diagnosis, Katie said she “felt out of breath more often than others during activities.” 

Transitioning with Confidence

When Katie turned 18, her anxiety escalated. “Making appointments and growing into adulthood and doing all the adult things was very terrifying,” she said. “What helped me the most was starting therapy.”

Katie had first started seeing Stacey Morrison, PsyD, a psychologist in the Division of Behavioral Medicine and Clinical Psychology, before she turned 18 as part of the Neurodevelopmental and Educational Clinic within the Heart Institute. The clinic helps address neurodevelopmental concerns in pediatric patients with complex heart conditions.

After she turned 18, Katie “graduated” from the Neurodevelopmental and Educational Clinic and began seeing Dr. Morrison as part of the Heart and Mind Wellbeing Center, which opened less than two years ago and provides emotional support and mental health care to patients and families affected by heart disease. 

“With the way anxiety presents, it can overlap with some of the signs and symptoms of cardiac concerns,” Dr. Morrison said. “So, one of the things we do is try to provide a little support around understanding what anxiety looks like and strategies to manage it.”

Working with Dr. Morrison allowed Katie to gradually transition from pediatric to adult care, at her own pace. It also gave her a forum where she felt comfortable asking questions. 

When it came time for Katie’s first appointment in the adult clinic, Dr. Morrison coached her through it, encouraging her to write down some of what she wanted to discuss with her new doctor. Then, she accompanied Katie to the appointment. 

“I think it was pretty insightful of Katie to take the initiative and seek help with the transition on her own,” Dr. Brown said. 

A few months ago, when she turned 20, Katie took over her care completely. 

Today, Katie works at an adrenaline park and loves go-karting in her spare time. Now that she’s gained confidence, Katie wants to help others who are going through a similar life change. 

“I want people to know they can transition from pediatric to adult care gradually,” she said. “It doesn’t have to be a rush. And Cincinnati Children’s will help you through it.”

Dr. Morrison calls it the culmination of all of Katie’s hard work: “Katie schedules all her appointments now and tracks everything herself. She also wants to give back. She tells me that if sharing her story helps just one person, it’s worth it for her.” 

(Published July 2024)