Mark Roeder, President & CEO, Adult Congenital Heart Association

What’s the best advice you can offer adults living with congenital heart disease (CHD)?

The best advice we have for adults living with CHD is to be your own best advocate. You do this through educating yourself about your condition and utilizing the resources available to you so that you can be a partner in your care with your ACHD specialist and team.

Why did the Adult Congenital Heart Association create its recently launched Accreditation process? 

Accreditation will enhance the standard of care to meet the needs of the growing Adult Congenital Heart Disease population and bridge the gap in understanding between CHD patients and providers. This field is relatively new, and because patients are living longer, there is a need to understand how to treat individuals with typical ailments associated with aging, along with CHD.

There’s nothing like hearing a baby’s heartbeat for the first time. However, each year, an estimated 40,000 families learn there’s something wrong with the organ responsible for producing that cherished sound, according to the American Academy of Pediatrics (AAP).

A complex concern

It’s possible that babies diagnosed with heart defects, called congenital heart disease (CHD), can go on to live long, healthy lives. But education and proper care are key. “It has become abundantly clear from studies performed over the past few decades that lifelong care for these patients is essential,” says Dr. Jamil Aboulhosn, medical advisory board chair of the Adult Congenital Heart Association (ACHA).

CHD may be characterized by one of 35 distinct abnormalities, including defects that are mild, like a small hole in the heart, to severe, such as a heart with only one pumping chamber. Heart rhythm issues and problems with the heart muscle itself also qualify as heart defects. For many children born with CHD, there is no cure, and while early heart care can provide a temporary fix, more surgeries and medical procedures will likely be needed later.

A call for specialized care

“The reality is that in the United States, less than 10 percent of patients born with CHD are followed at an adult CHD specialty center,” says Dr. Arwa S. Saidi, vice chair of ACHA’s Medical Advisory Board. “Many patients have a gap in care after their teen years until they develop symptoms or go to an emergency room. This is clearly not ideal.”

An estimated 2 to 4 million Americans are living with CHD today, and thanks to medical innovation, 80 to 90 percent of babies born with heart conditions survive to adulthood, according to the AAP. Though celebration of this success is warranted, experts say that to ensure more people with CHD can live quality lives, more attention needs to be paid not only to the longevity of heart care but the quality of it.

“It is imperative that these patients be cared for by centers and specialists that are appropriately qualified and trained to take care of this patient population,” Aboulhosn says.

Advocates clearly state that this awareness, coupled with growing research on CHD, is a winning recipe to help people with CHD not only survive but thrive.

SOURCE: Mended Little Hearts