10 things your doctor won’t tell you about congenital heart defects

Each year in the United States, about 40,000 babies are born with congenital heart defects (CHDs), more than any other type of birth defect, according to the United States Centers for Disease Control and Prevention. Most heart defects have no known cause, but now, thanks to the success of modern prenatal care and heart surgery for newborns, more of these children are surviving into adulthood than ever before. Infant mortality from coronary heart disease fell nearly 60% between 1987 and 2005, according to a study published in the Journal of the American College of Cardiology.

But many people born with congenital heart defects don’t realize how different their hearts continue to be from those of others. Coronary artery disease is not just a pediatric health problem.

Here are 10 things you might not have heard from your doctor about birth defects in adults.

1. Not all congenital heart defects are the same.

For each of the 1 in 100 babies born with a congenital heart defect – a problem with the structure of the heart – the condition may be unique. Indeed, there are more than 40 known types of congenital heart defects, notes the Children’s Heart Foundation, and even more that are unique. Throughout life, differences persist.

“No two adult patients have exactly the same symptoms; everyone is their own rare disease,” says Paula Miller, 63, of Memphis, Tennessee, a nurse born with a congenital heart defect. She now works as a Member Services Manager for the Adult Congenital Heart Association (ACHA), providing support to adults with heart defects.

The most common heart abnormality is pulmonary valve atresia and stenosis, which occur when a heart valve does not open fully, a 2012 national survey of US birth records found. The second most common, according to the National Heart, Lung, and Blood Institute, is the complex defect known as tetralogy of Fallot. In people with this disease, the heart has a hole between the ventricles and a blockage where the heart would normally lead to the lungs, among other defects.

2. More adults than children live with congenital heart defects.

You may not even know you were born with a congenital heart defect until you are diagnosed as an adult. And as an adult with congenital heart disease, you may sometimes feel alone, but you don’t. “For 49 years, I never met another person who was an adult living with ACHD,” Miller says, “and I was a nurse.” Today, more than one million American adults live with congenital heart defects, cardiologists estimate, while the number of children with coronary artery disease is less than 1 million. The US numbers are actually based on rates in Canada, where public health systems track patients throughout their lives.

“In the United States, we don’t have precise numbers because there is no tracking system with adults. Children grow up and get lost,” says Miller. That should change soon, as Congress passed the Congenital Heart Futures Act in 2010, a law that funds CDC tracking throughout a patient’s life. But right now, says Miller, “we don’t know who the oldest person living with ACH is. We have no way of knowing.

3. Surgery for a congenital heart defect is not a cure.

If you had heart surgery as a child, you need follow-up as an adult. “Doctors use the word ‘fixed,’ but you’re not fixed. You’re not cured,” says Miller, who adds that it was the fact about coronary heart disease that surprised her the most. According to the ACHA, adults with coronary artery disease can experience lifelong health problems such as abnormal heart rhythms, strokes, heart failure, and even premature cardiovascular death, as well as triple hospitalization rates compared to others. adults.

Symptoms easily go unnoticed because they are non-specific. According to Elizabeth E. Adams, DO, a congenital cardiologist at Penn State Hershey Medical Center, in Hershey, Pennsylvania, you might experience heart palpitations, have difficulty exercising, or experience increasing fatigue and shortness of breath. People “may want to stick their heads in the sand,” says Dr. Adams, rather than face the possibility of a worsening heart problem.

4. If you were born with a congenital heart defect, your adult heart needs specialized care.

You should see a cardiologist who specializes in congenital heart defects at least once, according to American College of Cardiology and American Heart Association guidelines, and annually for more complex heart defects. But according to the ACHA, less than 10% of people born with congenital heart defects receive the medical care they need as adults. The right provider is not the same as a general cardiologist, who may have only had six hours of lectures on coronary artery disease, with no hands-on experience, Miller says. In contrast, as an adult congenital heart specialist, Adams had more than a year of training specifically on adult congenital heart defects.

This area will soon become a new specialty, with the first board exams scheduled for October 2015 by the American Board of Internal Medicine. A cursory glance at the US map of adult congenital heart disease (ACHD) clinics maintained by the Adult Congenital Heart Association shows that these centers are rare in some areas. You may need to travel to get the specialist care you need. Miller is from Tennessee, which has only two ACHD clinics in the state. She suggests seeing a local doctor, but also using a team approach that includes an adult coronary heart disease specialist. “Find someone who will let you send them records and then talk to your local doctor,” she says.

5. Living with a congenital heart defect does not exempt you from other serious illnesses.

As an adult with coronary artery disease, you’re still susceptible to other aging conditions, Miller says, which surprises and disappoints people. “You think that’s what you have, and you won’t get anything else. But you can develop osteoporosis and the diseases of aging. These things happen when you get older,” she explains.

A diagnosis of uterine cancer has shocked heart patient Alissa Butterfass, mother of two young children. Butterfass was born with a heart defect called transposition of the great vessel. “I had a heart defect. I was done. I was safe,” Butterfass wrote in her personal story shared to ACHA, “but I’m still not immune to cancer.

6. Cardiac imaging tests are different for people with congenital heart defects.

For this reason, cardiologists who have not had specialized training in congenital heart defects might miss important signs of the disease. The opportunity may pass by just when you urgently need a heart valve replaced, for example. As Miller notes, “They are used to looking at a normally structured heart. We have great hearts and need special treatment. Defects in heart structure can be holes in the heart, missing vessels, valves malformed heart cells or a varied combination of changes in the normal layout of the heart.

7. As an adult with a congenital heart defect, you need to exercise.

“Growing up, I was never allowed to exercise,” Miller recalled. “Now they have discovered that exercise is extremely important! They encourage people to walk and move. Miller suggests working with your doctor to find a safe and appropriate exercise plan. The American Heart Association (AHA) notes that most people born with heart defects do not need to limit their physical activity.

8. You may need a pacemaker as you get older.

“I was never told that I might need a pacemaker,” Miller says. “But at 42, I had a pacemaker, when I had two young children.” A pacemaker is implanted under the skin and uses an electrical impulse to make the heart chambers beat regularly. An abnormal heart rhythm, called an arrhythmia, can develop in many people living with a congenital heart defect. Tachycardia, a very rapid heartbeat, is particularly common, notes a review in Circulation. And as Miller experienced, some coronary patients will develop atrial fibrillation as adults.

Inserting pacemaker leads into the heart is more complicated for many adult patients with coronary artery disease, Adams says. “If you don’t have all the right connections in the core, it can be more complicated to string the wires together,” she explains.

9. Drinking alcohol may be riskier for you if you were born with a congenital heart defect.

“Alcohol consumption can cause dehydration and make arrhythmia worse,” says Miller, who has uncontrolled atrial fibrillation – the most common heart rhythm abnormality. In addition to alcohol, smoking and stimulants like cocaine are especially dangerous when you’re living with a congenital heart defect. Using IV medications puts your heart at even greater risk, according to the AHA.

10. Finding a support network can be a life changing event.

“Having a support network of people who understood you was life changing. It ignited a passion in me,” says Miller, who now works with the ACHA. The ACHA discussion forum has 8,400 members counting, covering thousands of topics. And ACHA Heart-to-Heart Ambassadors are available to guide patients and families for additional personal support throughout their health journey. The ACHA Support Network community AHA also offers an online forum for parents of children with congenital heart disease.