Not Just For Kids: The Adult Congenital Heart Disease Program

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One thing that I wish more people knew is that Children’s isn’t just for kids. We have an Adult Congenital Heart Disease (CHD) Program for adults with CHD—an often underserved population. 

Here are a few questions and answers with Jonathan Cramer, MD, a pediatric and adult congenital cardiologist here at Children’s. He is also a specialist in imaging for complex congenital heart disease.

Q: What is the story behind the Adult Congenital Heart Disease Program?

Jonathan Cramer, MD: The initial adult congenital heart disease clinic at Children’s was founded by Dr. John Kugler more than a decade ago. He saw a growing need to formally care for adults who have grown up having their CHD treated in the pediatric clinic here at Children’s.

In the last 2 to 3 years, there’s been a formal transition for the clinic. It’s gone from being just a clinic to a more all-encompassing program that includes board certified and board eligible congenital adult cardiologists. With a larger team, we can provide a wider range of services.

The program is a joint venture between Children’s and the University of Nebraska Medical Center. We see patients at both locations, and we have outreach clinics in Lincoln, Kearney, and Rapid City.

Q: What types of services does the program offer?

Dr. Cramer: We offer full, comprehensive care to adults. It’s for either newly diagnosed or for those who have already had surgery.

congenital heart disease

Q: Are there any special services you offer for women with CHD?

Dr. Cramer: As women with CHD come into adulthood, they often have to think about family planning issues. We can counsel them on topics, such as their risk level if they decide to have a baby, whether they’re healthy enough to have a pregnancy, and, if they do get pregnant, what health issues might come up throughout their pregnancy.

Q: How many people with congenital heart disease do you see?

Dr. Cramer: Right now, we see roughly 1,000 adult patients per year. But we suspect that there are significantly more adults with CHD out there who are either not being seen by any cardiologist, or are being seen by an adult cardiologist who is unfamiliar with adult CHD.

Q: What are the three most important things you want people to know about the adult CHD program?

Dr. Cramer: A lot of times, when we treat pediatric patients, there’s a misunderstanding that we have fixed them permanently. But this is not true for most forms of CHD.

What usually happens is that we fix patients well enough so that they not only feel good, but can hopefully also lead a normal childhood. But about half of patients who had surgery as a child will need it again in the future, either because of valve breakdown or other issues.

Most congenital heart disease patients need ongoing care throughout adulthood—even though they might feel totally fine. That’s why it’s important to find a cardiologist who is familiar with adult CHD.

So, as far as what I wish people knew:

First, the providers at the Adult Congenital Heart Disease Program are the only board certified and board eligible adult cardiologists in the region who are trained to treat adult CHD.

Second, we offer comprehensive care that spans the spectrum from diagnosis to treatment and beyond.

And third, having that care matters. Regardless of how patients feel, almost all adults with CHD—and especially those who have had surgery—need continuing, lifelong care. Fortunately, that’s something we can provide them.

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Barb Roessner

Hi, I'm Barb, and I'm a Physician Assistant and coordinator of the Heart Failure and Transplant Program at Children's Hospital & Medical Center in Omaha. I work with patients and families at every step of the journey, from diagnosing their child's heart condition to my favorite part—calling them to say "We have a heart."

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