Fall 2007

Congenital Heart Care for Life

If your child has congenital heart disease (CHD), a structural heart abnormality present at birth, you want her to have the best comprehensive care from the start. But what about later in life, when she’s an adult? It’s important for parents of children with CHD to understand the value of having their children treated at a hospital that offers heart care throughout the age spectrum.

Complex, but Treatable
Heart disease is the most common birth defect. CHD represents a very wide and diverse set of diagnoses, from simple anatomic abnormalities to complex ones that could require multiple surgeries. At first, the complexities and nuances of your child’s condition may be hard to grasp.

“Early on, it’s essential to find a pediatric cardiologist who communicates issues in an understandable fashion,” says Ernest Siwik, MD, Interim Division Chief of Pediatric Cardiology at Rainbow Babies & Children’s Hospital. “The doctor should be expected to discuss disease-specific issues for your child, to present diagnoses and to provide a reasonable estimate of her needs and how she can be expected to progress over time.”

The effective treatment of CHD is a highly complex endeavor, requiring the expertise of cardiologists, surgeons, anesthesiologists, intensive care doctors and many others. This same level of expertise and familiarity with patient issues is required whether the patient’s age is 7 days or 70 years. Fortunately, outcomes in children with CHD are excellent. The vast majority of patients with CHD are thriving into adulthood. However, their medical needs may not end when they turn 18, and it’s difficult to find an adult cardiovascular specialist who can match a pediatric cardiologist’s knowledge, training and experience with CHD. It’s simply a different body of teaching.

A Lifetime of Care
Ultimately, it’s important to get young patients to invest in their own health care needs. When and how a child begins to take his health into his own hands is dependent upon not only his maturity, but also the gravity and complexity of the disease. Important issues for adult patients with repaired CHD may include risks
during pregnancy or having children with similar problems.

“The ideal situation is to have a collaboration between patient, patient family, and pediatric and adult cardiovascularspecialists who have expertise in all areas,” says Dr. Siwik. “This type of collaboration in a hospital with both pediatric and adult capabilities encourages open communication and knowledge transfer. It fundamentally provides the opportunity for a seamless health care transition and excellent heart care from fetal life throughout adulthood.”

The Rainbow Difference
At Rainbow Babies & Children’s Hospital, this collaboration has long been under way. Recently, University Hospitals established the Congenital Heart Disease Center, a collaboration between Rainbow and the Heart & Vascular Institute atUniversity Hospitals Case Medical Center. Here, every patient’s care is coordinated by a multidisciplinary team of specialists who aid in the health care transition and provide comprehensive and personalized care to adults and older adolescents with congenital heart disease.

Things you need to know