Every year, approximately 40,000 children are born with congenital heart defects. Thanks to advancements in medical care, around 97% of these children survive into adulthood.

While this statistic highlights medical progress, it also reveals a complex reality—over two million individuals in the United States live with CHD, yet only about 15% receive regular follow-up from specialized health care professionals. This gap emphasizes the need for awareness and action as individuals with CHD transition into adulthood and face unique health challenges that require ongoing management.

Recognizing this critical need, the American Heart Association is highlighting the importance of continuous care. They aim to encourage individuals born with CHD to actively seek out adult congenital heart specialists for regular monitoring and support.

Congenital heart defects

“A congenital heart defect is a defect in the heart that one was born with. Unlike acquired heart diseases, which develop over time in adults, congenital heart defects are present from birth and can affect the heart's valves, muscle walls or vessels,” said Dr. Athar Qureshi, pediatric and adult congenital interventionist cardiologist at Texas Children’s.

These defects can vary widely in severity and complexity, from simple issues like a small hole in the heart, to more complex conditions that require multiple surgeries or ongoing treatment.

“Recent innovations in treatment have been approved by the Food and Drug Administration and are transforming care. New technologies enable less invasive procedures, reducing the risks associated with open-heart surgery,” said Richard Cumby, a principal congenital therapies consultant at Medtronic.

As children with congenital heart defects grow, their needs may evolve. While some may require immediate surgical intervention, others might manage their condition with regular monitoring and medications. Regardless of the specific defect or treatment path, lifelong care and follow-up are essential.

Transition to ACHD

As children with congenital heart defects grow, they enter a new phase known as adult congenital heart disease. This term encompasses the ongoing health needs of those who were born with heart defects and have successfully navigated the challenges of childhood to reach adulthood.

“Fortunately, most patients with congenital heart disease in the United States are diagnosed in childhood or even before birth,” Dr. Qureshi said. “However, many adults with congenital heart disease are diagnosed later, often due to symptoms like fatigue or a heart murmur. They may initially see a general cardiologist who lacks expertise in congenital conditions, and only later get referred to a specialist in adult congenital heart disease.”

Delayed recognition can lead to significant health implications. Individuals may miss necessary interventions and tailored care plans, increasing the risk of complications. Regular check-ups with specialists familiar with ACHD can lead to better outcomes. With appropriate care, many adults with ACHD can effectively manage their conditions and thrive in adulthood.

Need for continued care

Continued care is vital for individuals with congenital heart defects as they navigate adulthood. This phase introduces challenges that necessitate regular monitoring and an understanding of evolving health needs. Building a strong relationship with a specialized health care provider ensures personalized care, creating a supportive environment for patients to discuss concerns and manage their health proactively.

“I’ve had patients deemed lazy by family and friends due to constant fatigue,” Dr. Qureshi said. “After an examination, we discovered a valve in her heart that needed replacement. She hadn’t recognized her symptoms because she’d become so accustomed to them. After we replaced the valve, she said, ‘Dr. Qureshi, I feel alive now.’ This highlights the importance of ongoing care. You may not realize you’re symptomatic but could have a major issue.”

Ongoing education empowers individuals to make informed decisions about their treatment options. By actively engaging in their health care journey, adults with ACHD can significantly enhance their quality of life. Ultimately, prioritizing continuous care allows individuals to navigate the complexities of their health with confidence and embrace a vibrant future.

To navigate the complexities of ACHD, staying informed is crucial. For valuable resources and support, visit the American Heart Association website.

The above story was produced by Multi Platform Journalist Chloe Chapel with Community Impact's Storytelling team with information solely provided by the local business as part of their "sponsored content" purchase through our advertising team.