Congenital Heart Defect (CHD) Awareness Week is Feb. 7-14. Congenital heart defects are the most common birth defects in the United States, affecting approximately one in every 100 babies each year. One in four of them will need surgery or medical intervention to survive. At the Indiana University School of Medicine and Riley Children's Health, John Parent, MD stands at the forefront of care for families and children living with congenital heart defects.
Meet John Parent, MD
Parent completed his medical degree from the IU School of Medicine, where he also went on to do his pediatric residency and pediatric cardiology fellowship. During his fellowship, he obtained his Master of Science in Clinical Research from IU. He completed one additional year of training at Cincinnati Children's Hospital Medical Center in cardiomyopathy, cardiac transplant, advanced heart failure and mechanical circulatory support. For the last 12 years, he has served as a pediatric cardiologist at Riley Children’s Health and is currently an associate professor of clinical pediatrics at the IU School of Medicine, where he is also medical director of pediatric cardiac transplantation, cardiomyopathy and advanced heart failure.
“I was born with congenital heart disease that I needed followed for regularly throughout my childhood,” Parent shared.
While he never required surgery, being born with a CHD is what inspired him to pursue medicine with a focus on congenital heart disease.
In addition to his focus on CHD, Parent also studies Duchenne muscular dystrophy, a genetic disease that largely affects boys. It results in muscle weakness that starts in early childhood and progresses to the point where most of the patients are wheelchair dependent by their mid-teenage years. Parent and his team follow these patients in a multidisciplinary clinic in collaboration with neurologists, pulmonologists and various subspecialties as the disease progresses. Duchenne muscular dystrophy also affects cardiac health.
“From a heart standpoint, their heart muscles can get weak and scarred over time,” Parent said. “This is known as dystrophin-related cardiomyopathy, which is caused by an abnormality in the dystrophin gene/protein in the body that is not made correctly or not made in a sufficient quantity. This results in part of the heart muscle breaking down, thus becoming scarred and dysfunctional.”
Although Duchenne muscular dystrophy is considered a rare disease, there are specific signs caregivers can keep in mind if the disease is a concern. Often signs begin during toddler and preschool age and manifest as muscle weakness, difficulty getting up from the floor or climbing stairs, or enlarged calf muscles. However, signs can be subtle and often delay diagnosis and treatment. Therefore, parents should relay any concerns to their child’s physician. Luckily, help is on the way. Duchenne muscular dystrophy has been recommended by the U.S. Department of Health and Human Services to be added to newborn screening and several states have already added or have pending legislation to add this to their states newborn screening panel. The Duchenne community is hopeful this will lead to earlier diagnosis across the board and more effective treatment.
In infants, heart failure can present as fast breathing and difficult feeding, which can lead to the critical warning sign of poor weight gain. For adolescent children, signs such as fatigue, shortness of breath with activity, racing heartbeats or fainting often indicate the heart is struggling to pump blood effectively.
Healthy heart recommendations
It is well known that one in 100 kids are born with congenital heart disease.
“Think about all the people you know,” Parent said. “There are many people walking around in society these days who you know well, with congenital heart disease, and you don’t even realize.”
Congenital heart disease recognition really starts with excellent fetal and prenatal healthcare. Many forms of CHD are recognized before a patient is born, and this recognition can inform the care team and family on prenatal monitoring, perinatal delivery options and locations, and postnatal care. However, because congenital heart disease might not appear right away as a baby, Parent emphasizes that recognizing symptoms is imperative before the window for effective treatment might close. Heart surgery is a common treatment, and people often struggle with symptoms and aftermath.
With over a decade of expertise in cardiac health, Parent suggests several key habits for maintaining healthy hearts. He recommends:
- A healthy lifestyle
- A balanced diet
- Keeping weight in a healthy range
- Regular checkups with a primary care doctor/pediatrician
- Staying active with sports or physical activity at least 30 to 60 minutes a day
Consistent exercise routines promote long term-health and healthy heart muscles and prevents high cholesterol and narrowing of blood vessels.
The American Academy of Pediatrics provides recommendations for screening cholesterol levels for children. Children between 9-11 years old and young adults between 17-21 years old should see a primary care doctors for cholesterol screening.
Lasting hope in an ever-changing world
“Forty years ago, there were just not (treatment) options for significant congenital heart disease that we have today,” Parent shared. “It is rare that we do not have a good option for a patient to get several, if not indefinite, good quality years of life.”
Knowing that the landscape of CHDs has changed vastly over the last 40 years, being born with a congenital heart disease is not a death sentence. Modern medical centers and surgeons, including at Riley Children’s and IU Health, are well trained and equipped to provide patients with the best treatments to fit their needs.
“Riley and many other programs have a cardiac catheterization lab and interventional cardiology doctor that specializes in congenital heart disease who can put valves in at the catheterization lab,” he said. “This means not all CHD patients require surgery through their chest. It is possible to go in through a vessel in your leg or your arm to repair or place a new valve.”
Parent wants patients and caregivers to know that things are getting better, and clinical care is only going to keep improving with less invasive measures, better outcomes and better survival.
Several resources are available for those looking to advocate for or learn more about CHD. Mended Little Hearts® is hosting two upcoming events to raise awareness of CHDs. The first event is Rock Your Scar® 2026; a photo contest and an awareness campaign is geared to empower people of all ages to be proud of their journey. The second event is Remember our Hearts 2026, taking place on Feb. 12. Starting at 7 p.m., light a candle in remembrance of all the heart warriors gone too soon and share your light on social media to raise awareness.
