Finding out your child has a congenital heart defect (CHD) can come with a lot of emotion, fear, and urgent questions about what the future may hold for your family. But it’s important to know that major advances in heart care have transformed the reality of what it’s like to live with many of these conditions.
Today, the vast majority of babies with a congenital heart defect will reach adulthood.
“For complex CHDs, survival is no longer the main benchmark for success,” says Luke M. Wiggins, MD, cardiothoracic surgeon at Children’s Hospital Los Angeles. “Pediatric cardiac specialty centers have the tools to improve quality of life, promote long-term health, and help kids thrive.”
As a major referral center for the Southern California region, CHLA’s nationally ranked Heart Institute team is well-versed in treating fetal, neonatal, and pediatric patients with even the most challenging heart anatomy.
For families just starting out on their care journey, the Heart Institute team shares what parents should know about congenital heart defect outcomes.
1. No two hearts look the same.
The heart is an incredibly complex organ—which is why the same diagnosis may look completely different from one child to another.
There are more than 35 distinct types of congenital heart defects, and the potential combination of differences is nearly infinite. This is why heart defects often require a personalized treatment approach.
This was true for a young patient named Samuel, whose exceptionally unique heart anatomy required an innovative treatment plan that provided life-saving interventions while allowing him to grow and heal at home before reconstructive surgery.
2. Early detection—and accurate diagnosis—is essential.
While standard fetal imaging, like a 20-week ultrasound, can help to illuminate major structural issues, it’s essential that doctors understand all details of a patient’s anatomy to make the most informed diagnosis. It’s common for families visiting the Heart Institute to be seeking a second opinion after an initial diagnosis at their local hospital.
In the Fetal Cardiac Clinic, renowned specialists in fetal cardiology, congenital heart defects, and prenatal heart care use state-of-the-art diagnostic tools, including 3D/4D ultrasound and fetal echocardiography, to help provide exceptional diagnostic clarity.
Often before patients are even born, a multidisciplinary care team of fetal cardiologists, cardiothoracic surgeons, and interventional cardiologists starts devising a personalized care plan.
Neonatal or pediatric patients may receive imaging in the Catheterization Lab or the Cardiac Imaging Suite, which includes a first-in-the-nation low-field MRI machine that allows unprecedented diagnostic precision.
3. When it comes to complex heart defects, volume matters.
The Heart Institute team conducts an average of more than 14,000 patient visits and 700 cardiothoracic surgeries each year.
Over 50% of neonatal heart surgeries at the hospital are high-risk cases, making CHLA one of the largest complex surgical programs in the country.
“Volume makes specialty centers more effective at understanding risks and complications and optimizing care amidst challenges,” says Dr. Wiggins.
“We have pediatric specialists in every area of cardiac care who are doing open heart surgeries, catheterization procedures, anesthesia, and critical care day in and day out,” he adds. “This is in contrast to specialists at smaller hospitals who may encounter a pediatric patient with complex care needs much more infrequently.”
Additionally, CHLA’s heart team observes a two-surgeon system in the operating room—a rare practice among similar programs.
“This approach allows for a much more fluid management of the many layers of complex congenital operations, which typically results in the operation progressing more quickly,” Dr. Wiggins explains. “For the patient, that means substantially less time under general anesthesia with their heart stopped and on a bypass machine.”
4. Research is the backbone of progress for complex heart care outcomes.
Just a few decades ago, many congenital heart defects were universally fatal. Today, innovations like fetal surgery, minimally invasive catheter-based procedures, and new medical devices have made congenital heart surgeries safer and more effective.
These innovations were made possible through research—and many key treatment breakthroughs and technologies have origins here at CHLA.
35 years ago, Head of Cardiothoracic Surgery and Heart Institute Co-Director Vaughn A. Starnes, MD, developed a new surgical technique to treat a valve abnormality called Ebstein anomaly. The Starnes procedure revolutionized management for critically ill babies with this condition, and a version of the operation is still used worldwide.
Today, the Heart Institute has more than 100 research studies and active clinical trials. Voluntary clinical research helps doctors and scientists learn more about current and investigational treatments and technologies—often before they are widely available—with a focus on solutions specially-designed for the smallest patients.
In 2022, Heart Institute physician-researchers spearheaded the clinical trial that led to FDA approval for a first-of-its-kind Minima Stent, and in 2024, Dr. Wiggins and his team launched a trial for a novel, size-adjustable prosthetic pulmonary valve. Both solutions are designed to be expanded as the child grows, without the need for multiple invasive replacement surgeries.
Most recently, CHLA’s interventional cardiologists started using a miniaturized imaging device that enables them to conduct patent ductus arteriosis (PDA) closures, a repair for a common heart defect in preemies, from right within the baby’s isolette.
5. For complex conditions, comprehensive heart care should continue through childhood.
Some heart defects may resolve on their own or need just one surgery to restore functional heart anatomy, and children will go on to live life without complications. For children with more complex anatomy, comprehensive multidisciplinary care is required as they grow up.
In children with single ventricle disease who have undergone the Fontan procedure—the final stage of a three-part surgical reconstruction—multiple organ systems are affected. Families may receive coordinated care from specialists in Cardiology, Hepatology, Nephrology, Pulmonology, Nutrition, Psychology, nursing, and Social Work.
Home monitoring is also an essential aspect of long-term care for many children—helping them stay safe outside the hospital while ensuring peace of mind for families and providing important data to their care teams.
6. You’re not alone.
It can feel impossible to wrap your head around a tough diagnosis. But working with a trusted team of specialists means your family will have guidance and support every step of the way.
“Early conversations with families are often focused on complexity and survival,” Dr. Wiggins says. “Later, they go home and return to everyday life, and as their surgeon, I might not see the kids again until months or even years later.
Seeing their progress—growing, developing personalities, building relationships—it’s all incredibly rewarding. It’s a powerful reminder of why this work matters.”
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