Your baby has been diagnosed with a congenital heart defect, what next

Hearing that your baby has a congenital heart defect (CHD) can feel overwhelming. Questions, fear, and uncertainty often hit all at once. While every diagnosis is different, pediatric cardiologists say families are not alone, and today's care options are more advanced than ever.

Ryan Serrano, MD, a pediatric cardiologist at Loma Linda University Children's Hospital, shares what parents can expect and the most important steps to take after a CHD diagnosis.

Start with understanding the diagnosis

One of the first steps after a CHD diagnosis is making sure families truly understand what's happening.

"When we meet with families, I always start by asking what they were told and what they understand so far," Serrano said. "That helps guide the conversation and make sure we're all on the same page."

Doctors often use diagrams, drawings, or booklets to explain what a normal heart looks like, and how a baby's heart may be different. This visual, step-by-step approach helps parents process complex information and ask informed questions.

Tip for parents:
Don't be afraid to ask your care team to slow down, repeat information, or explain things in a different way.

CHD exists on a wide spectrum

Congenital heart disease affects about 1 in 100 babies in the United States, according to the Centers for Disease Control and Prevention, but severity can vary widely.

"Some heart defects are very small, like tiny holes in the heart that may close on their own and never impact a child's life," Serrano said. "Others are more complex and may require lifelong care and multiple surgeries."

About one in four CHD diagnoses falls into a more critical category, where babies may need medication or intervention before going home from the hospital.

What this means:
A CHD diagnosis does not automatically mean a poor outcome. Many children go on to live active, full lives.

Expect additional testing and imaging

Before birth, most babies diagnosed with CHD receive a fetal echocardiogram, a specialized ultrasound of the heart. After birth, doctors typically confirm findings with another heart ultrasound.

Depending on the condition, families may also discuss:

• Genetic testing or evaluation
• Additional imaging studies
• Cardiac catheterization or other procedures to guide treatment

These tests help the care team plan the safest and most effective approach.

Talk openly about life after diagnosis

Parents often want to know more than just medical details: they want to understand what life might look like for their child.

"We talk a lot about expectations," Serrano said. "Families want to know if their child can go to school, play sports, have a job, and live a normal life."

For many children with CHD, the answer is yes, especially with modern treatments and long-term follow-up care.

Outcomes have improved dramatically

Advances in pediatric cardiology have transformed survival rates and quality of life.

"Fifty years ago, many heart conditions were considered fatal," Serrano said. "Today, many of those same conditions are treatable, and children are living longer, healthier lives."

Even in complex cases, medical and surgical innovations now offer options that didn't exist just decades ago.

Focus on what you can control

Most congenital heart defects are not preventable and are often linked to genetics or factors outside a parent's control.

However, Serrano says that healthy habits during pregnancy still matter:

• Avoid smoking and alcohol
• Manage conditions like diabetes
• Focus on good nutrition and prenatal care

"These steps support overall fetal health, including heart health," he said.

If your baby has been diagnosed with a congenital heart defect, it's normal to feel scared, but you don't have to navigate it alone. The pediatric cardiology teams at Loma Linda University Children's Hospital work closely with families, obstetricians, and specialists to provide comprehensive, compassionate care from diagnosis through childhood and beyond.

Loma Linda University Children's Hospital has been ranked among the Best Children's Hospitals by U.S. News & World Report for 2025-2026 - 8th in California and 9th in the Pacific Region, with Pediatric Cardiology & Heart Surgery ranked No. 18 nationally.

Visit online for more information on cardiology & heart surgery at Children's Hospital.