Jessica's story

Jessica Sumter at 5 years old, with the scar from her first open heart surgery still visible.

As a 23-year-old woman with no kids, Jessica Sumter knows she might look a little out of place in the waiting room at Children's Wisconsin's Herma Heart Institute. But the truth is, she's right where she needs to be.

After all, she's been coming here her whole life.

When she was less than a year old, Jessie had open-heart surgery to repair Tetralogy of Fallot, a complex condition that is a combination of several congenital heart defects. It decreases oxygen in the bloodstream and can cause babies to appear blue or to become fussy or lethargic. She had another surgery when she was 12.

Throughout her childhood, Jessica would see Michele Frommelt, MD, developing a close, trusting relationship as the years went on. But when she turned 18, Jessie made the transition to the Adult Congenital Heart Disease (ACHD) program. It's one of the few programs in the nation – and the largest in the state – dedicated to caring for adults with CHD. 

Advances in medicine, along with the kind of focused care like that offered at Children's, have helped more children born with CHD survive into adulthood. With these advancements, it became imperative that Children's develop a program to meet that population's unique needs. Today, Children's has since grown into one of the premier ACHD programs in the United States.

In the past 10 years, the ACHD program at Children's has gone from scheduling about 150 appointments per year to more than 2,000. The specialists in the program are fully dedicated to ACHD, and Children's has been a national leader in the field, contributing to important and innovative research, as well as taking a role in educating doctors about ACHD.

When the time came to switch to an adult provider, Dr. Frommelt handpicked the cardiologist who would take care of Jessica, and even sat in on their first appointment together.

"She made it really easy," Jessica said. "She introduced me to cardiologist and we all talked for a few minutes. It was really nice of her to do that. It completely helped, and it completely changed everything for me."

Jessica Sumter, now 23 years old, is happy and healthy, and able to follow her passion for equestrian competitions.

Back in the saddle
The importance of Jessica being in the ACHD program became apparent in January, when she was thought to have pneumonia, but then came to Children's and was diagnosed with endocarditis, an infection of one of her heart valves. One week later, she was in surgery.

Jessica ended up having two surgeries, and was in the hospital for 18 days. Throughout the crisis, Jessica said she knew she was in good hands.

"I felt very confident in everything that was going on, even with how sick I was," she said. "If I had been someplace else, I wouldn't have been nearly as confident in everything or as trusting. So that was great. I ended up actually meeting the entire department of cardiologists while I was there. They helped me understand everything that was going on and made it as easy for me as possible."
 
Jessica is now doing well, having resumed her active life – which includes riding horses and show jumping – back in Cedarburg. She has been seen for a follow-up appointment, and expects to soon resume her schedule of coming back only for annual visits.

There's no question that, for Jessica, having access to the ACHD program is worth the occasional curious glance she might get from people in the waiting room.

"I love that I still get to come here, and that they can still do all the research and everyone has all the experience," she said. "This transition feels a lot safer than just saying I'm going to go to my primary care doctor from now on, and they'll send me to an ER if something happens. This way I've already got my cardiologist, and they can predict or forewarn me what's going on with my heart, and how I can handle it. If I had just been at my primary doctor for this last episode, they wouldn't have found the problem in time. That's why I appreciate Children's so much."

Dr. Earing said that the success of the ACHD program isn't just in the numbers, but in the patients' everyday lives.

"Most of our patients do well, they work, they pay their taxes, they have relationships, they do the things you and I do. Our goal is to maintain that quality of life. They get outstanding care when they're children, and that care should be the same when they're adults in our program. We now have the experience and the knowledge to take care of someone throughout their entire lifespan."