In their words: A Q&A with leaders of the first-of-its-kind facility dedicated to adults with congenital heart disease

Since 2004, the Adult Congenital Heart (ACH) Program at Texas Children’s has provided groundbreaking care, and on Nov. 4, the hospital will open a first-of-its-kind dedicated facility designed by and for adults with congenital heart disease. The 27,000-square-foot space, situated on the 24^th floor of Texas Children’s Lester and Sue Smith Legacy Tower, will include a 16-bed inpatient unit, outpatient clinic, cardiac rehab gym, diagnostics lab and more. Read on to learn more from the medical and surgical directors of the program, Drs. Peter Ermis and Ed Hickey.

For additional information, visit texaschildrens.org/ACH.

1. Why should adults with congenital heart disease be treated at a children’s hospital? 

Ermis: Adults with congenital heart disease do not fit well within the current health care system because they are survivors of a chronic childhood disease. Congenital heart expertise still resides mostly within the pediatric cardiology and congenital heart arena as adult cardiologists almost entirely take care of adults with acquired disease – not one that was present at birth.

About 1.6 million adults currently live with congenital heart disease in the United States, but they still are a rare patient within an adult hospital environment. Thus, the adult with congenital heart disease will always be a very small percentage within an adult hospital, and this does not allow these patients to get the unique care they need. In a children's hospital, the vast majority of cardiac patients have congenital heart disease, and these adults with congenital heart disease are not as unique.

Hickey: Here at Texas Children’s, our Heart Center is ranked #1 in the nation for pediatric cardiology and heart surgery by U.S. News & World Report because the expertise, experience and resources available to our large team are second-to-none. This translates into superb outcomes for our patients. There is no clinical evidence for restricting access to such care to certain age groups. In fact, it is our responsibility – having enabled children to survive their initial heart lesions – to provide care for these patients’ congenital heart disease for life, irrespective of age. What we are really doing at Texas Children’s is eradicating any arbitrary age cutoff for treating congenital heart disease. This is necessary and long overdue. For patients with congenital heart disease, Texas Children’s is your home for life!    

1. Why is this state-of-the-art facility a game changer for the field of adult congenital heart disease?

Hickey: Adults with congenital heart disease have historically had a very raw deal. Compared to their pediatric counterparts, who enjoy vast resources and focus, adults typically have very limited access to congenital heart disease care. Even though there are currently more adults than children living with congenital heart disease in Texas, there are fewer than 40 ACHD-accredited cardiologists in Texas versus hundreds of accredited pediatric cardiologists. Here at Texas Children’s, we have the largest number of ACHD-accredited cardiologists in the state.

Globally, adults with congenital heart disease have generally been managed piecemeal, either within pediatric environments or in adult environments with teams unfamiliar with congenital heart disease.

The opening of our new ACH facility is a direct result of the remarkable vision and leadership that our Board and President & CEO, Mark A. Wallace, have displayed. They recognized the disparity in care that our pediatric patients experience as they graduate into adulthood. Our new space provides ACH patients with exactly what they have always needed – congenital heart disease expertise concentrated within an adult environment that is experienced, trained and designed specifically for their needs. It is timely, visionary and necessary!

Ermis: This new facility allows us to not have to fit these unique ACH patients into an existing care environment that will never work ideally for their unique needs. It affords us the opportunity to provide care in a space that utilizes the best of all areas to create an optimized care environment, with the ACH patient at the center of all we do. Additionally, it will bring a group of providers with different experiences – cardiologists, intensivists, surgeons, nurses, adult medicine providers, etc. – to focus on the ACH patient and always put them and their unique needs at the center of any discussion or decision making.

For a sneak peek of the new space, click here.

1. What can patients expect when they are admitted or come to a clinic visit on the new floor?

Hickey: Upon arrival, patients will be met with a slick and beautiful Adult Congenital Heart facility that feels modern, professional and suited to older teenagers and adults. The dedicated team includes experienced adult and pediatric providers, who are all experts in congenital heart disease. One highly unique feature is that all 16 inpatient beds are fully flexible; they offer the highest level of intensive care, but can flex down to acute level care as the patient’s acuity de-escalates. This means that the patient remains in their same room, and it is instead the physicians and staff who change as clinical needs evolve. 

Ermis: Patients coming to this new space can expect an area and a care team that is specifically dedicated to them. It is the Goldilocks of the health care system for them – not too pediatric and not too adult, but just right for the ACH patient.

1. What does this milestone mean to you professionally and personally?

Ermis: Personally, opening this dedicated facility is the next step in a long road in trying to move the care of the ACH patient forward. It is the culmination of a tremendous amount of work by hundreds of individuals, and I’m so honored and proud to be able to be a part of it.

It started with a simple question – How could we best care for our ACH patients? While a tremendous piece of the puzzle, this is just one step (albeit a big step!) in trying to revolutionize care in a way that works for them. I hope our approach can be emulated by other centers so ACH patients across the world can be the focus of these dedicated care units. I feel so humbled to work on behalf of this population of patients and honored to work at a hospital that prioritizes their care. 

Hickey: My single most important professional goal is to correct the disparity in care ACH patients experience by improving access to expert care. Having now largely succeeded in achieving the first major goal in the field of congenital heart disease – enabling children to survive their initial repair – I would contend that the next biggest challenge facing the congenital heart community is to help these children live long, productive and active adult lives free from premature heart failure. Eradicating any age barrier and providing congenital heart care for life is an essential and significant milestone. Our new facility is representative of the commitment we have here at Texas Children’s to providing the necessary congenital heart care for life that these patients deserve.