Heart Month: Spotlight on Adult Congenital Heart Disease
Tuesday, February 5, 2013
At Children’s National, our doctors treat a variety of patients with different needs, but one groups’ most distinguishing characteristic may be their age.
Since 1998, Karen Kuehl, MD, MPH, has provided services for adults with congenital heart problems at Children’s National. Then, in 2001, the Washington Adult Congenital Heart Disease Program began as a partnership between Children’s National and neighboring hospital, Washington Hospital Center.
Congenital heart disease (CHD) is the number one birth defect. More than 90 percent of children who undergo surgery to correct congenital heart defects live to adulthood, which is quite remarkable. However, nearly 50 percent of these survivors do not seek regular cardiac care, which is critical for their long-term health.
“Our program takes care of adults with CHD as it has become an growing population because patients who had CHD hadn’t had the best survival rates in previous generations,” Children’s National’s interim program director Anitha John, MD, said. “But recently these same patients have been doing really well and this created a subspecialty.”
Dr. John said this subspecialty is so new that only about 100 doctors have the advanced training to treat these patients with special needs. Adult patients with CHD who want to get pregnant or need to have an appendix removed need unique care because of their hearts. In fact, the American Board of Medical Specialties just added Adult Congenital Heart Disease as a new subspecialty, to meet the growing demand and unique medical needs of patients.
Specialists like Dr. John take a more holistic approach as a care coordinator, treating not only the appendix, but the heart and mind of patients. Psychological care is important to adult patients because oftentimes growing up with a heart condition and having to endure multiple hospitalizations can influence post-traumatic stress disorder. This attention to detail in care has created a close doctor-patient relationship for specialists like Dr. John.
“Our patients’ relationship with us is different than most. We know more about their personal life, and our model of care for them is focused on keeping their hopes and dreams in mind. It’s not rare for us to know a patient’s entire family and extended family,” Dr. John said
Because the field is ever-evolving, it can be rewarding and a challenge: a challenge for patients, who have unclear outcomes, but rewarding when they meet the goals they set for themselves.
“Visitors are often floored at our patients’ will to live,” Dr. John said. “Our patients schedule their visits around life events since they are still very active people. They say, ‘I’ve got this, I have to deal with it, but I have to live my life.’”
Dr. John said they are a population with tremendous resilience and that comes from dealing with CHD from a young age.
“For me, treating adult CHD is a marker of survival and what medicine can do. The field is constantly changing and evolving with what we’re learning and the patients are constantly changing,” Dr. John said. “That type of progress is really a testament to the field’s innovation and adaptation to what patients are doing. You can see the progress it’s made in someone’s life.”
About the Expert
Anitha JohnDirector, Washington Adult Congenital Heart Program
Karen Kuehl, MD, MPH, and Anitha John, MD, PhD, are adult congenital heart disease specialists at Children’s National Health System.