Congenital heart disease affects nearly 40,000 American newborns each year. It can range from mild to severe; some cases might require surgery within the first year of the patient’s life. A person born with CHD is prone to chest pains, rapid breathing and fatigue that can limit their activities for their lifetime.
"You can imagine a young couple or an established family finding out from their doctor that their expected baby will be born with a heart defect," says Dr. Gruschen Veldtman, the director of Inpatient Adolescent and Adult Congenital Heart Disease Services at Cincinnati Children’s Hospital Medical Center.
"They learn that this heart defect will affect the longevity of their child. It’s devastating. It’s like a sentence before they even get started."
Cincinnati Children’s is known for helping correct CHD in infants and children through surgery and treatment. Now they are going a step further and providing help for patients as they move into adulthood.
"As a child grows up and goes off to college," explains Dr. Veldtman, "there are a new set of challenges. All of a sudden they realize that the parents aren’t there to carry the burden and they need to understand their condition and what they need to do in order to deal with it."
Young adults with CHD often feel overwhelmed with the logistics of their care. Not only do they need to remember things like correct dosages and doctor appointments, but they are now faced with new lifestyle questions like alcohol consumption and birth control methods as they transition into adulthood.
"We find some young people are angry and don’t want to accept that they are different than the people around them," says Dr. Veldtman. "They rebel against their parents, they don’t go to their appointments, they stop taking their medications. It’s a very dangerous period for them."
To equip them with the knowledge and techniques needed for a long and successful life, Dr. Veldtman and his team help them navigate safely through all of the new challenges they will face as adults with a variety of programs.
"We have a team that focuses entirely on CHD patients transitioning from childhood to adult life," says Dr. Veldtman. "We prepare young people aged 12 onwards and get them used to the kind of things they will face.
"If you start early in and understand what it means for your future, it won’t come as a surprise when it does happen."
Aptly named Ready SET (Start Empowering Teens) Go, the program is personalized around the CHD patient’s own interests, activities and goals. In addition to private consultations with a Cincinnati Children’s physician and a healthcare team, support groups and health education seminars are offered to both the patient and their parents.
Under the guidance of specialists, patients work through an individualized transition plan that educates the patient on their medical condition and the corrective surgeries they may have received and teaches them about their ongoing medical management, lifestyle choices and healthcare options.
But the Adolescent and Adult Congenital Heart Disease Services team doesn’t stop there. The expert team stays with the patient as they graduate college and move into the next phase of life that brings a new set of questions and potential complications.
"As adults, their heart condition may change," says Dr. Veldtman. "And then, on top of that, adult disease may set in like high blood pressure or diabetes.
"For women who want to start a family, they need to think of their own safety during pregnancy and many think to themselves ‘Will my baby survive? Will I pass on my condition to my baby?’ "
Understanding that the preexisting heart defect plays a role in medical diagnosis and treatments for CHD patients is where Adolescent and Adult Congenital Heart Disease Services truly shines.
The clinic offers specialized treatment for each CHD patient by having a primary care physician on staff as well as cardiologists, an internal medicine specialist, OB/GYN doctors and a hematology expert.
"I tell all of my friends that Cincinnati Children’s is the only reason that I’m still here at age 44," says Candy Robinson with a smile. "I have a very productive life because of the care I receive there."
Robinson was first diagnosed with a complex heart defect when she was four months old and has undergone surgeries throughout her life. She has regular visits with Dr. Veldtman and the rest of the team.
"I don’t know if I would still be here today if Dr. Veldtman hadn’t started the adult clinic and focusing more on problems of adults that may have lost their way," says Robinson.
"When you’re younger, you may not ask all of the questions that you should be asking. I now really understand my condition and the anatomy of my own heart. I learned that there are so many other people with the same condition out there dealing with the same problems and things that I deal with."
Robinson says she can’t express in words how grateful she is to Cincinnati Children’s and the life-changing treatment she has received there – especially how grateful she is for being treated by Dr. Veldtman.
"Dr. Veldtman is a blessing," she says. "He is extraordinary, kind and a really amazing doctor.
"He saved me."
For more information about Cincinnati Children’s Adolescent and Adult Congenital Heart Disease Services team, call 844.202.1547 or visit www.cincinnatichildrens.org/ACHD.