HealthONE is the proud home of heart specialists who are industry leaders in innovative treatment options for improving heart health in the Denver metro area and across the Rocky Mountain Region. As we move through February and National Heart Month, we take a look at Congenital Heart Disease in adults and children.
Congenital Heart Disease (CHD) affects approximately 1% of babies born every year in the United States, making it the most common birth defect. Of those born with CHD, around 25% have a critical heart defect that will require transcatheter and/or surgical intervention in the first year of life.
Children with CHD, especially those with more severe defects, often require lifelong treatment. Thanks to advances in treatment options, approximately 95% of people with mild to moderate congenital heart disease (and 75% of those with complex defects) live well beyond 18 years of age.
Children with CHD, especially those with more severe defects, often require lifelong treatment. Thanks to advances in treatment options, approximately 95% of people with mild to moderate congenital heart disease (and 75% of those with complex defects) live well beyond 18 years of age.
As a child with CHD grows into adulthood, the patient’s needs also change. Adults with congenital heart disease (Adult Congenital Heart Disease, or ACHD) can now see an adult congenital cardiologist, who specifically cares for adults with congenital heart disease.
In 2020, there were approximately 26,591 adult cardiologists, 2966 pediatric cardiologists, and only 454 board certified ACHD cardiologist. Today, there are only two heart programs in Colorado with board certified ACHD cardiologists. The Heart Center at Rocky Mountain Hospital for Children is one of them.
Causes of CHD
The most common cause of Congenital Heart Disease is random chance. Genetic abnormalities (gene defects) have also been identified as a cause. These include well-known syndromes such as Down syndrome, Williams syndrome, DiGeorge syndrome and other gene defects. Other causes include, environmental factors such as pollution, prescription and non-prescription medications, as well as alcohol and substance abuse during pregnancy. Often, you can see defects in multiple members or generations of a family, suggesting a genetic link in the condition.
Detecting CHD
Although sometimes CHD is not detected until a person becomes an adult (eg. an atrial septal defect), thanks to significant advances in fetal and newborn screening, it is usually detected during pregnancy or childhood. This helps parents understand a diagnosis and allows medical teams time to prepare a proactive and effective care plan for immediate treatment as necessary.
Screening for CHD can include:
- A fetal ultrasound
- Screening due to familial presence of certain heart defects (such as a bicuspid aortic valve)
- A newborn congenital cardiac heart defect screening test, which is now required in all states.
If CHD is detected later in life, symptoms or findings (such as a murmur) can be identified on a physical exam during a routine clinical visit or a sports physical, if a patient presents with specific episodes of fainting or passing out, or a cardiologists identifies an abnormal findings on an EKG.
Treatment for CHD
There are many treatment options for CHD:
- Medication or ongoing monitoring by a cardiologist who specializes in congenital heart conditions
- Surgical or heart catheterization procedures to repair holes or abnormal valves
- Pacemaker implantation
- Electrophysiology procedures or ablations
- In some patients, heart transplant
If surgical repair is needed, families may find comfort knowing that surgical repair for congenital heart defects began in the 1940’s and significant progress has been made ever since. But even today, although transcatheter and surgical procedures repair the heart and allow it to function better, the heart is still not considered ‘normal’ and requires ongoing care including monitoring and for some patients repeat procedures.
Understanding Adult CHD Symptoms
Symptoms of CHD in adults, at first, can be very subtle and very different than you might think. Every case is different. Some of the most common symptoms in adults are:
- Palpitations of the heart (heart beating fast or slow)
- Passing out
- Swelling in the legs
- Difficulty with strenuous exercise
- Heart failure
- Stroke
The Importance of Regular Medical Follow-Up for Adults With CHD
Many adults with CHD assume they are cured. Some don’t know they need to continue follow-up and some don’t seek care because they “feel fine.” However, onset of symptoms is frequently a late finding and it is preferred to identify a problem during regular follow-up before the problem requires urgent treatment.
Caring for adults with congenital heart disease can be difficult because, as previously noted, some adults only seek care when symptoms are present. Additionally, if there is not continual medical care from childhood, original records of the heart defect can be difficult, if not impossible, to find. This can cause delays in diagnosis and treatment for the patient’s specific heart defect.
Congenital heart disease is a life-long condition and needs continuous care or monitoring. Surgery as a child, does not automatically mean a person’s heart is healed for life. It’s important that adults see an ACHD specialist throughout adulthood in addition to routine cardiovascular care required for normal adults. If surgery is needed, a congenital heart surgeon will perform the surgery.
Three Critical Tips for Adults with CHD
- At a minimum, patients with congenital heart disease should know their diagnosis, what medications they take and they should be able to provide information about any residual cardiac abnormalities. Additionally, we encourage people with CHD to have quick access to notes from recent physician appointments. Often, it is helpful to save this information on a smart phone so that it is easily accessible should an emergency arise.
- Some people assume you can’t exercise if you have congenital heart disease. This is not true. In fact, exercise is often recommended.
- Dental care is also important for an adult with CHD. There is a risk for infection of the heart valves called endocarditis. Poor dental hygiene is one common and preventable risk factor, the other is taking an antibiotic prophylaxis, if recommend by your doctor. This is because bacteria find their way into the blood stream during certain dental procedures. In a normal heart, the bacteria do not find a spot to lodge and cause infection, but repaired heart defects with abnormal flow or artificial valves may present an easy place for bacteria to lodge and cause infection. These can be serious and challenging infections to treat.
The Heart Center at Rocky Mountain Hospital for Children: Adult CHD Specialists
Abhay Divekar, M.D.
Dr. Divekar specializes on the continuum of pediatric and adult congenital heart disease. He is board certified in Pediatric Cardiology from the American Board of Pediatrics, and Adult Congenital Heart Disease from the American Board of Internal Medicine. He has been board certified in ACHD since 2015. Dr. Divekar joined Rocky Mountain Pediatric Cardiology in 2018. He is the current chair of the ACHD subcommittee for the Denver chapter of the American College of Cardiology.
David Miller, M.D.
Dr. Miller joined Rocky Mountain Pediatric Cardiology as the interventional cardiologist in 1994. He is board certified in Pediatric Cardiology from the American Board of Pediatrics, and Adult Congenital Heart Disease from the American Board of Internal Medicine. Dr. Miller received his ACHD board certification in 2019 but has cared for adult patients in the practice for many years.
Vinod Sebastian, MD
Dr. Sebastian joined Rocky Mountain Pediatric Heart Surgery to provide compassionate, patient-centered care and heart surgery to children needing cardiothoracic surgery. Dr. Sebastian trained at Stanford University at the largest cardiac surgery practice in the management of Tetralogy, Pulmonary atresia with Major aorto pulmonary collaterals and also in low birth weight cardiac surgery. Previously he served as a cardiac surgeon in Texas at a cardiac surgery practice with a large experience in the “Nikaidoh procedure”. He has joined Rocky Mountain Pediatric Heart Surgery to provide compassionate, patient-centered care and heart surgery in Colorado in need of cardiothoracic surgery. Over the course of his career, Dr. Sebastian has received numerous honors and awards. He has published articles and lectured frequently on topics related to cardiothoracic surgery.