Determining the Next Steps in Your Child’s Cardiac Health Care

Approximately 1 million children are living with a congenital heart defect, many of whom are under the care of specialized pediatric cardiologists. Dramatic advances in pediatric cardiology care over the last three decades have significantly increased the survival rate of children with congenital heart disease. Today, about 1 in 100 babies is born with a congenital heart defect, and about 3 in 10 of those will require surgery or some type of catheter-based intervention within the first month of life. Approximately 97 percent of them survive those initial procedures.

Because of these improvements in care and survival, large numbers of pediatric cardiology patients are now transitioning into adult care, which can bring some anxiety for parents who have been their child’s medical advocate since before birth. If your child was born with a heart defect, you have likely been their guide and main support throughout many years of medical examinations, tests, procedures and perhaps surgeries. Letting go can be difficult.

Your child’s pediatric care team may have been in your child’s life for many years. The prospect of your child “aging out” of these trusted medical professionals, and out of your involvement in medical decisions, can feel overwhelming. As your child gets older, look for these signs that he or she is ready to transition to an adult cardiologist:

• Your child knows the names of all of his major conditions.
• He can explain his conditions and how they affect him.
• He knows all of his medications and the purpose of each.
• He knows the names of each of his specialists.
• He knows what activity limitations he has.
• He wears or is willing to wear a medical alert bracelet.
• He is able to make his medical appointments independently.
• He is comfortable making major medical decisions independently, or is willing to allow you to continue to attend medical meetings with him.
• He is also able to communicate independently during medical visits.
• He knows when to take medications and is able to take them independently.
• He is compliant with medical treatment.
• He is able to make his own living arrangements and handle his own finances.
• He is able to understand and arrange for medical insurance.
• He has a plan for education and vocation.
• He is able to live independently or has a plan for guardianship.
• He is able to understand adult government benefits.
• He is able to create a summary personal health record and maintain it independently.

“We’ve now come to the point where the expectation is that all children with congenital heart disease will survive. The question is, are they going to thrive?” explains Bradley S. Marino, MD, MPP, MSCE, Heart Center Co-Director, Research and Academic Affairs, Division of Cardiology, Ann & Robert H. Lurie Children’s Hospital of Chicago, and a founder of the Cardiovascular Bridge Program, a partnership between Lurie Children’s and Bluhm Cardiovascular Institute at Northwestern Memorial Hospital.

The Bridge Program works with patients ages 16 to 26 who have bicuspid aortic valve aortopathy, the most common congenital heart defect, to help them transition from pediatric to adult care. During their visits, patients receive care from a pediatric and an adult bicuspid aortic valve aortopathy specialist, and a pediatric and adult advanced practice nurse. The care team tracks patient readiness and works with patients and their caregivers to enable a smooth transition into adult care.

Ultimately, says Dr. Marino, the goal is “to have an effective transition from a pediatric to an adult provider, and more importantly, help make sure that patients can thrive as adults.” It’s not so different from the goal of every parent: to help your child make a successful transition into adulthood. But as the parent of a child with a congenital heart defect, you just have a few more tasks to check off the list.