The Providence Adult & Teen Congenital Heart Program, at Providence Sacred Heart Medical Center & Children’s Hospital, is among the first heart programs in the U.S. to receive accreditation from Adult Congenital Heart Association.

The program here is one of 16 in the country certified earlier this year in ACHA’s foundational round of accreditations. Based in Philadelphia, ACHA is a nationwide, nonprofit organization focused on connecting congenital heart patients, family members, and health care providers in a comprehensive support network.

Congenital heart defects are the most common birth defects and are diagnosed in 1 percent of all births in the U.S., says Dr. Jeremy Nicolarsen, Providence Adult & Teen Congenital Heart Program director.

Today, 1.4 million adults in the U.S. live with one of the many types of congenital heart defects, according to the ACHA.

Continued advancements in the study and treatment of congenital heart disease, especially over the course of the last decade, Nicolarsen says, has led the ACHA to push for the standardization of care in the field.

Here, Nicolarsen and Providence’s congenital heart disease team of doctors practice on the fourth floor of Sacred Heart’s Children’s Hospital at 101 W. Eighth. The team includes Drs. Chris Anderson, Pamela Burg, Janice Christensen, Carl Garabedian, and Hrair Garabedian, and certified physician assistant Katrina Schneider.

The medical group also provides patient care at outreach clinics in Post Falls; Moses Lake, Wash.; and Richland, Wash., Nicolarsen says.

Spokane is the second smallest city in terms of population with a facility on the accreditation list.  Only Ann Arbor, Mich., is smaller. Sacred Heart also is just one of seven on the list that isn’t affiliated with a major medical school, such as the Ahmanson/UCLA Adult Congenital Heart Disease Center, in Los Angeles, or the University of Michigan Adult Congenital Heart Program, in Ann Arbor, Mich.

“Our patients are living longer than ever before,” says Nicolarsen. “We want to get the message out that we’re here and able to provide high quality care.”

There’s a nationwide shortage of cardiologists with expertise in adult congenital heart disease to take care of this growing population of patients, Nicolarsen says.

In 2012, the American Board of Medical Subspecialties recognized adult congenital heart disease as a subspecialty of cardiology. Since then, medical leaders in the field have created a standardized two-year fellowship that was approved by the Accreditation Council for Graduate Medical Education, Nicolarsen says.

Trainees now are exposed to adult patients with congenital heart disease in multiple disciplines, including imaging, electrophysiology, diagnostic-interventional cardiology, and post-operative care.

The ACHA awarded its first accreditations near the end of September. In a written statement at the time of the announcement, Mark Roeder, ACHA president and CEO, said, “There are now more adults than children in the U.S. with congenital heart disease. Accreditation will elevate the standard of care and have a positive impact on the futures of those living with this disease.”

Roeder added, “Coordination of care is key, and this accreditation program will make care more streamlined for patients, improving their quality of life.”

To receive accreditation through ACHA, Providence Adult & Teen Congenital Heart Program had to demonstrate it has ample resources and expertise dedicated to the adult congenital heart subspecialty.

One of the heart program’s more recent patients is Daniel Reyes, a 37-year-old resident of Post Falls. Reyes says he hadn’t been to Providence Adult & Teen Congenital Heart Program prior to last summer.

Reyes, born with a complex congenital heart defect, says doctors discovered that his recent and sudden discomfort was due to the development of blood clots in his lungs.

While being treated for blood clots, however, Reyes, who says his normal weight is around 300 pounds, gained another 100 pounds in the hospital.

Providence’s congenital team then discovered Reyes had been experiencing heart failure for quite some time.

“I was retaining water, which was something that for me was a result of heart failure,” Reyes says. “It was like, ‘no wonder all these years of diet and exercise haven’t worked.’’’

After being treated for roughly a month at Sacred Heart, Reyes says he’s lost about 125 pounds.

“Heart failure isn’t curable, but it’s treatable, and my long-term prognosis is good,” he says.

He adds, “Staff, doctors, the work that they did was great. But not just the medical part, the emotional part. It’s hard being in the hospital that long. I was sad and depressed, but they did a great job of encouraging me and helping me to stay strong.”

As for Nicolarsen, Providence Adult & Teen Congenital Heart Program doctors recruited him from the University of Colorado Hospital, in Aurora, Colo.

From the outset of arriving in Spokane in the early summer of 2016, his main charge was to help build the program here and complete its accreditation application to the ACHA.

Nicolarsen says he and physician assistant Schneider spent “hundreds of hours of work” assembling the application package to submit to ACHA.

“We had the application submitted by October 2016, and members of the accreditation board arrived here for a site visit in March,” Nicolarsen says. “By about June, we were starting to hear rumors that we might be accredited, and then we were formally notified in September.”

“It’s a testimony to what the doctors and community have built here,” Nicolarsen says. “I think we turned a lot of heads across the country with what we’re doing in Spokane and this region.”