Nearly 2 million adults in the U.S. live with congenital heart defects or CHDs. These patients survived the repair of structural abnormalities in their hearts while infants or children and they require lifelong attention from a cardiology specialist. While only 20% of adults with CHDs receive this continuing care, according to the American Academy of Pediatrics, Sutter Health patients can access this expertise.
Dr. Taylor Holve, a cardiologist at Sutter Health’s Greater Central Coast specializes in adult congenital heart disease. Dr. Holve explains what adults with CHDs should know about their hearts as they age.
Challenges for adults living with CHDs
Often adult patients with CHDs are left without a medical home so to speak, as they age out of pediatric care and do not have a replacement physician who can treat their condition. Sutter Health aims to prevent these patients from falling through the cracks, so they can be seen before they potentially start to have symptoms of their disease progression, some which are preventable.
Cardiologists who specialize in ACHD have a greater understanding of the potential complications and repercussions of the disease which patients may develop over their lifetime. Each individual ACHD patient, even with the same diagnosis, may have very different anatomy and other considerations to manage.
Follow up care
Many patients with congenital heart defects mistakenly believe that the surgery they had as a child was a fix for life. They feel fine and do not think they need ongoing care. It is often during this time that their repair may be degenerating, and they may not be aware of what is happening within their heart.
Sutter’s heart experts work to prevent a gap in care which can occur when the patients are too old to see a pediatrician, but they are not experiencing symptoms requiring them to see a cardiologist. The complications which can develop from CHD, like leakages or abnormal heart rhythms, often go unnoticed in youth, but they could be life-threatening in the long term.
Cardiologist Dr. Taylor Holve specializes in adult congenital heart disease.
Heart health of CHD patients
The initial tests to evaluate adults with CHD are non-invasive, starting with electrocardiograms (ECG) and echocardiography to look at the status of the repair and to check ventricular function. A cardiac MRI can access the anatomy of the heart more closely, and it provides an accurate picture of the chamber sizes and blood flow. Prolonged monitoring and device-based therapy are often used to evaluate and treat rhythm abnormalities.
Leading a healthy life with CHDs
If patients with CHDs are evaluated properly, problems can be addressed, and quality of life can be improved. Most of these patients can lead productive lives. Because of technological advances and great success in treating congenital heart defects in utero and after birth, there are now more adults than children living with CHD. Congenital heart defects do not necessarily limit athletic ability or function. There are even some professional athletes and Olympians who have this condition, and they can still compete successfully.
Nearly every adult with a CHD will need monitoring and some form of treatment or care during their lifetime. Their cardiologist can manage electrical problems and ventricular dysfunction, with medication as well as device-based therapies. Their physician is also watching for the residual effect of the CHD on other organ systems, development of other associated diseases linked with ACHD, and the need for heart structure intervention.
When symptoms do arise, medical therapy for abnormalities of heart rhythm and pacemakers can be used. There might be a need for structural interventions in the heart like valve replacements and surgery on congenital lesions.
Family history and congenital heart disease
The risk of having a baby with a congenital heart defect is influenced by several factors including family history and genetics. You can’t pass along congenital heart disease to your children, however the risk for CHD is three times greater if a first-degree relative has a congenital heart defect. Screening for those who are pregnant or wish to become pregnant is essential, as well as evaluating siblings.
Other factors which raise the risk of CHDs include smoking during pregnancy, certain medicines taken during the first trimester, and other medical conditions like diabetes according to the National Heart, Lung and Blood Institute. If you are at high risk of having a baby with a congenital heart defect, your doctor may recommend screening before the baby is born or strategies to help prevent a congenital heart defect.
CHD can also be linked to complications which develop sporadically in patients, pre-birth and during childhood. Almost all newborns in the United States are screened for congenital heart defects shortly after birth. The American Academy of Pediatrics (AAP) recently updated screening recommendations for newborn critical congenital heart disease (CCHD).
Treatment for CHD at Sutter
Sutter has more than 300 highly trained heart specialists who can help you understand your options so you can live a healthy life as an adult with CHD. They can work with you to create a plan for follow-up visits, health screenings and medications. To learn more about care for adults with CHDs at Sutter, click here.
NOTE: This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
