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Your Good Health A survivor’s
struggle
Many congenital conditions require lifelong medical care that is hard to find
By Kerry Klein
Kaiser Health News
R
achael Goldring was born with congenital heart disease. Had she been born a few decades earlier, she probably would have died as a baby. Now 24, Goldring is part of a population of patients who present new challenges to a health care system unaccustomed to dealing with survivors of once-fatal conditions. There are now more adults than kids living with some of these diseases, and medical training lags behind. Young adults who can’t find suitable doctors may drop out of care, and their conditions may worsen. Goldring’s condition was pulmonary atresia with tetralogy of Fallot. She was born without a pulmonary valve directing blood from her heart to her lungs. It’s the condition that talk show host Jimmy Kimmel’s baby was born with this spring. “I had my first surgery when I was 9 months,” Goldring said. “Now, they do it from birth.” Her condition has also meant three more surgeries, a heart valve replacement, complicated secondary diseases and a lifetime in and out of doctors’ offices. “I just celebrated my oneyear anniversary of staying out the hospital for the first time since birth,” she said. “So, this year, knock on wood, it’s been amazing.”
But she fears it might not last. Right now, she’s in limbo between pediatric and adult medical care. For Goldring, finding a good doctor could be a matter of life and death. Today, congenital heart disease survivors can live well past childhood. Dr. Patrick Burke, a pediatrician at Valley Children’s Healthcare in Madera, Calif., said other once-fatal ailments like sickle cell disease and spina bifida have undergone similar advances. “This is the so-called medical miracle promised to our parents and grandparents,” Burke said, adding that miracle kids like Goldring grow up to be complicated adults. “The job’s not done after the surgery or the initial treatment.” Burke is in charge of a new program at his hospital in the new field of “transitional care.” He said many conditions worsen around age 18, just as children age out of pediatric care. Now, pediatrician Megumi Okumura — of the University of California-San Francisco — and other researchers are looking for ways to remove what she considers artificial barriers. Clinics around the world are trying new strategies like giving non-pediatric doctors more training or bringing in transitional specialists to connect chronically ill young adults with new providers.
As a child, Rachael Goldring had multiple open-heart surgeries to treat her congenital heart disease. At 24, she still sees pediatricians because she has had difficulty finding the right care in adult medicine.
[KERRY KLEIN/KVPR]
About heart defects Congenital heart defects are conditions that are present at birth and can affect the structure of a baby’s heart and the way it works. The catch-22 of being an adult with congenital heart defects is that many cardiologists are unfamiliar with the altered cardiac anatomy and physiology of a person who underwent a complex congenital heart defect surgery as a child. On the other hand, a pediatric cardiologist may not know how to manage your condition along with traditionally adult acquired diseases such as coronary artery disease, obesity or hyperlipidemia. • Adult congenital heart disease is not uncommon. 1 in 150 adults are expected to have some form of congenital heart disease. • Meanwhile, congenital heart defects affect about 8 to 10 out of every 1,000 children. The condition may produce symptoms at birth, during childhood and sometimes not until adulthood. • About 800,000 adults in the United States have grown into adulthood with congenital heart disease, and this number increases by about 20,000 each year. — Centers for Disease Control and Prevention/Texas Children’s Hospital/Cleveland Clinic
