June 7, 2023

Follow-up care essential if you were born with heart disease

One of the great success stories of modern medicine is the enormous increase in life expectancy for people born with a heart defect — also known as congenital heart disease.

In the 1950s, most children born with heart disease did not survive. The invention of the heart-lung machine in the mid-20th century helped pave the way for open-heart surgery, which has evolved over the past 75 years. Accordingly, heart defects that proved fatal decades ago now are routinely repaired with advanced surgical techniques, saving lives every day.

A baby born with heart disease now has a 95% chance of living well into adulthood. About 1.4 million adults in the U.S. now live with congenital heart disease — a number that first surpassed the number of children with heart disease more than a decade ago. To meet the changing healthcare needs, programs that specialize in the care of adults with congenital heart defects have developed over the last 15-20 years.

“These remarkable advances in the field led to a new cohort of patients who are now in their 50s, 60s and older,” says Dr. Suhaib Kazmouz, a UW Health pediatric cardiologist who also sees adult patients with congenital heart disease.

Dr. Heather Bartlett, an adult congenital cardiologist who leads the Adult Congenital Heart Disease (ACHD) program at UW Health, says demographic trends indicate that the volume of ACHD patients will continue growing.

“Since I came to UW Health in 2014, our program has expanded from two to eight providers,” Dr. Bartlett says. “We love caring for these patients, and we want to make as easy as possible for those not getting care to access our program.”

Two-thirds of adults born with heart disease not seeking care

Dr. Kazmouz says as many as two-thirds of adults born with heart disease are no longer receiving follow-up care.

“These are people who had heart surgery as a baby or child and may think they are fine,” says Dr. Kazmouz. “Unfortunately, by not maintaining regular follow-up care, they risk future complications. That is when we often see these patients for the first time.”

Ideally, Kazmouz adds, patients with congenital heart disease should have periodic check-ups that can help fend off more serious problems.

Kathy Rahlf, a 48-year-old patient of UW Health’s ACHD program, is grateful for the ongoing attentive care she receives from Dr. Bartlett and her colleague, Dr. Nicholas Von Bergen. Born with a major heart defect called Tetralogy of Fallot, Kathy had two open heart surgeries as a child and three more as an adult. Her symptoms are stable, but her story is a reminder that people with congenital heart disease should seek regular care because of their higher risk profile.

“Dr. Bartlett and Dr. Von Bergen care for me as a whole person, not just a heart patient,” says Kathy, who lives in Janesville, Wisconsin. “They encouraged me to seek therapy when I was struggling emotionally. They take all the time I need when I have questions and always respond quickly when I send a MyChart message. They are wonderful.”

Anyone born with heart disease has a higher-than-average risk of complications such as arrhythmia, heart failure or a lack of physical energy to perform basic daily activities.

UW Health ACHD program is here to help

“If you or someone you know had heart surgery during childhood but is no longer getting care, we’re here to help,” Bartlett says. “Even if you feel fine or don’t remember the specifics from your childhood, we are here to help sort through the details.”

Bartlett says anyone born with heart disease should seek out a program that specializes in adult congenital heart disease. “There are not a lot of ACHD programs around the country, so if you live far away, we will work with cardiologists in your community to ensure you get the right care as conveniently as possible.”