Understanding your child's heart defect
To have the best understanding of long-term outcomes, it is important to talk with your cardiologist. It is also important to understand the limits of a prenatal diagnosis. Unfortunately, we do not always have all of the answers about your child's diagnosis before birth. While we can find many issues in utero, the way the blood flows through the heart changes after your child is born and starts to breathe. For certain heart conditions, it can be difficult to predict how the heart will handle those changes. More testing may be needed after birth to understand all the details of your child's condition.
Focusing on quality of life
For children with complex heart defects, movement, play, feeding and language skills may develop more slowly. Some children with heart defects may need extra help in school or have emotional or behavioral challenges.
Because the outcomes of surgery for heart disease have greatly improved over the past twenty years, the goal of the Herma Heart Institute has moved beyond survival after surgery. We now focus a great deal of effort on making sure that heart kids experience a high quality of life. Some of these efforts have grown into full programs, like our Developmental Follow-Up Program, School Intervention Program and Steppin' It Up Program. Learn more about these programs in answer #16.
Improving outcomes through adulthood
More and more, children with congenital heart defects are living longer into adulthood. New complications can occur as a result of the original heart defect. The Herma Heart Institute created the Adult Congenital Heart Disease (ACHD) Program to respond to these new challenges. Learn more about the ACHD program in answer #17.
Question 16: Thinking about how my child will grow and develop, what should I expect from them as a preschooler, school-age child, a teenager and as an adult?
Our team is devoted to helping your baby grow into a healthy adult and have lifelong success. Here are a few programs we offer to children and their families to improve quality of life:
Developmental Follow-Up Program: For many reasons, skills such as talking, crawling, and playing may develop more slowly in children who have had heart surgery or intervention for complex congenital (present at birth) heart defects early in life. Our developmental experts include specialized developmental pediatricians, psychologists, nurses, and occupational, physical, and speech therapists. They work closely with your child, especially during the important first three years of life, helping you watch for developmental delays and advancing your child's skills in many areas. We suggest that all children who have had a heart surgery as babies participate in the program, even if they appear to be healthy and doing well.
Steppin' It Up Program: Children with heart disease and their families sometimes have a great deal of anxiety about taking part in physical activities. This can impact their long-term health and quality of life. Our Steppin' It Up Program helps patients develop the skills they need to safely do physical activities and improve self-confidence. In this yearlong program, patients advance through three tiers, and have the support of experts in cardiology, exercise physiology, psychology and physical and occupational therapy.
School Intervention Program: Children with congenital heart defects are at risk for delays in learning. To make sure our patients and families have the support and resources they need to reach their full potential, we developed our School Intervention Program. Since 2015, children from kindergarten through college have used this program. We assess each patient's educational needs and goals, and create personal academic plans by working with their school. Our school intervention specialist serves as a consistent link between the hospital, family and school, providing clear communication.
Question 17: As my child gets older, does your medical care provide a plan for transitioning from pediatric to adult care?
We have a formal transition process in place to prepare adolescents for transition to our Adult Congenital Heart Disease (ACHD) Program as they move from childhood to adulthood. The move from child-centered to adult-centered care is a gradual process that The Herma Heart Institute calls the Transition Program. Successful transition begins during the adolescent years, and ensures patients continue to receive specialized cardiology care and lifelong monitoring.
Members of the Transition Program work with each patient's pediatric cardiologist to ensure uninterrupted health care that is patient-centered, age and developmentally appropriate, flexible, and comprehensive. Transition visits start around age 16 and continue yearly until transfer of care to the ACHD program. Fortunately, patients cared for at Children's Wisconsin can continue their cardiology care within the same hospital they have visited for years.
Our ACHD program is the largest in the state and one of the largest in the nation. All of the team's cardiologists are board certified in adult congenital heart disease. Today, more than 2,600 adult congenital heart patients are followed in the program. Our ACHD program meets the highest standards of ACHD care and therefore is nationally accredited as an Adult Congenital Heart Association Comprehensive Care Center.