Adults with congenital heart disease can’t always find a doctor who can treat them
Although congenital heart disease is the most common birth defect in the U.S., for the 1.4 million adults living with the disease there remain big challenges in finding a doctor to treat them.
Although congenital heart disease is the most common birth defect in the U.S., affecting 40,000 newborns every year, for the 1.4 million adults living with the disease there remain big challenges.
Congenital heart disease can manifest in various ways, be it a missing part of the heart, altered vessels or any number of different abnormalities in the structure of the heart.
Unlike the more common heart diseases that develop later in life, such as coronary artery disease, congenital heart disease is something people deal with starting the day they are born. Patients are typically treated by their pediatrician until they are 18.
MORE ADULTS, THAN CHILDREN, LIVING WITH CONGENITAL HEART DISEASE
After that, treatment for adults becomes less consistent. In 2010, there were about 1.4 million adults living with a congenital heart defect in the United States, more than the approximately 1 million children living with the condition, according to a study published in the journal Circulation in 2016.
“When they turn 18 and 20, they move away from pediatrics into a neverland,” said Dr. Satinder Sandhu, a professor of pediatrics and director of the adult congenital heart disease and pediatric cardiology lab at the University of Miami Health System.
To help figure out what happens to patients after pediatric care, the University of Miami Miller School of Medicine is partnering with 13 other healthcare institutions across the U.S. to study how gaps in healthcare are affecting the care of adults with congenital heart disease. One of the hospitals in the study is Nicklaus Children’s Hospital.
“We don’t really understand all the gaps [in treatment] and why they are not receiving care,” said Dr. Ron Kanter, director of electrophysiology at Nicklaus. “We hope to contact thousands of individuals with CHD who are now grown up and focus on those who are in underserved populations.”
In the past, families were often told the disease was “fixed” following a successful surgery in adolescence, Kanter said. But, in reality, further treatment was still needed. Compound that with people in their 20s and 30s often not seeking medical care, and you have some explanation for the gaps.
The research is partially funded by a $4.9 million award from the Patient-Centered Outcomes Research Institution and is being led by the Louisiana Public Health Institute and Children’s National Hospital.
TROUBLE WITH ADULT TREATMENTS
When Luis Varela was 5, his father noticed his lips were tinged blue. An Army doctor, he knew what this meant. Soon, Varela was diagnosed with Tetralogy of Fallot, a form of congenital heart disease that impacts 1,660 newborns in the U.S. every year. In this condition, which is rare, a newborn has four heart defects at birth.
Having an Army doctor father assured him good treatment at a time when there were only a handful of doctors who could perform the surgery he needed. He says he lived a normal and active childhood.
Now 61, it was in adulthood that he would experience the difficulties of living with congenital heart disease.
“None of my doctors in my adult life specialized in pre-existing heart conditions,” Varela said. “They all know about it, but they don’t know how to treat it.”
Varela isn’t alone in his difficulties finding a doctor to treat him.
Anyone who has moved and scoured the internet for a new doctor, knows the difficulties of finding someone to trust. The difficulty is compounded for those with congenital heart disease.
“Adult cardiologists don’t understand this,” UM’s Sandhu said. “This is not what they studied. They studied a normal heart.”
Faced with challenges of finding a qualified doctor, congenital heart
disease patients pushed for board certifications to treat adult congenital heart disease. As of 2015, doctors must get certified to treat adult patients with congenital heart disease.
“Not having a doctor that can treat me has been a thorn in my butt for most of my life,” Varela said.
Before he found a qualified doctor, Varela spent years over-medicated and going into the hospital monthly. Now in the care of Sandhu, he has reduced his medications and hospital visits.
DESPITE RISKS, ABLE TO HAVE CHILDREN
Another of Sandhu’s patients, Ashley Schutt was also diagnosed with Tetralogy of Fallot at birth.
She underwent her first open heart surgery at 3 and at 15 she was told she would never have children. One in four children identified with congenital heart disease have to undergo surgery or other procedures to repair the heart.
“When you are pregnant and you have a heart condition, the heart goes through more stress,” Schutt, 41, said. “During pregnancy, I could go into cardiac arrest.”
Luckily, medical technology has advanced since her teenage years.
Schutt, with the aid of doctors and modern medicine, was able to have children.
“I kept up with my appointments and drove to the doctor every other week during my second trimester,” she said. Schutt is now the mother to a 12-year-old girl and a 4-year-old boy.
Schutt, who says she now lives a normal, albeit careful life, has advice to others with congenital heart disease.
“It’s very important to stay up on things,” she said. “Things can develop and change. Follow up with a cardiologist you trust.”