Heartbeat Forward • CHD Awareness

Congenital Heart Defects

What they are, who they affect, and why the world needs to pay closer attention.

1 in 100 Babies born with a heart defect every year

40,000+ CHD births in the U.S. annually

#1 Most common birth defect worldwide

85%+ Survive into adulthood with proper care

The Basics

What is a congenital heart defect?

A congenital heart defect is a structural problem with the heart that is present at birth. These defects occur when the heart or the blood vessels near it do not develop normally during pregnancy.

Congenital heart defects are the most common type of birth defect worldwide. They are more common than childhood cancer. More common than Down syndrome. Yet most people have never heard the words spoken out loud.

CHD ranges widely in severity. Some defects are mild and require little or no treatment. Others are critical and demand surgery within the first days or weeks of life. All of them are real. All of them matter. And every diagnosis changes a family's world in an instant.

In that moment, parents do not need statistics. They need someone to stand beside them. That is what Heartbeat Forward exists to do.

Types of CHD

No two hearts are the same.

There are many different forms of congenital heart disease. Some affect the walls between chambers, some the valves, some the arteries. All require ongoing care, community, and compassion.

Most Common

Ventricular Septal Defect

A hole in the wall separating the two lower chambers of the heart. The most frequently diagnosed CHD. Ranges from small and self-closing to large and requiring surgical repair.

Common

Atrial Septal Defect

A hole in the wall between the two upper chambers. Can go undetected for years. When significant, it affects blood flow and requires medical attention.

Complex

Tetralogy of Fallot

A combination of four heart defects present at birth. One of the most recognized cyanotic heart defects, often causing a bluish skin tone and requiring early surgical intervention.

Critical

Transposition of the Great Arteries

The two main arteries leaving the heart are switched. A life-threatening condition requiring surgery within the first days of life.

Severe

Hypoplastic Left Heart Syndrome

The left side of the heart is severely underdeveloped. One of the most complex CHDs, requiring a series of three open-heart surgeries beginning in the first week of life.

Lifelong

Many Other Forms

Pulmonary stenosis, coarctation of the aorta, patent ductus arteriosus, and dozens more. Each diagnosis is its own journey. Each family deserves support designed for their specific road.

The Journey

The journey no one else sees.

Hospital Stays

Days, weeks, sometimes months. Time that cannot be given back.

Intensive Care

Parents learning to read monitors. Learning not to panic at every alarm.

III

Lifelong Appointments

Cardiology visits that never stop. A calendar organized around the heart.

Medication Management

Dosages, timing, side effects. A second education no parent asked for.

The Weight on Siblings

Brothers and sisters who understand more than they should have to, this young.

The Financial Strain

Medical costs that reshape a family's entire financial life without warning.

The Invisible Weight

Children with CHD often demonstrate extraordinary resilience. But resilience does not eliminate the need for support.

The emotional impact on parents, siblings, and caregivers can be profound and lasting. For many families, CHD is invisible to the outside world. The child looks healthy at the grocery store. The parent smiles at the school pickup. No one knows that three weeks ago that child was in the ICU.

This is why awareness matters. Not just awareness of the diagnosis, but of the full, unending, invisible weight that families carry every single day.

Why It Matters

More children die from CHD than from all childhood cancers combined.

And yet congenital heart disease does not receive the same public attention, research funding, or systemic urgency. That is not a judgment. It is simply a fact that must change. Greater awareness leads directly to better outcomes. It is not an abstract goal. It is a life-saving one.

Earlier Diagnosis

When more people know the signs, more children are identified before a crisis occurs.

Better Research Funding

Public awareness drives philanthropic and governmental investment in solutions.

Stronger Community Support

Families feel seen. Isolation decreases. The emotional burden lightens.

Improved Hospital Resources

Awareness translates to advocacy, which translates to better equipped cardiac units.

Reduced Isolation

When society understands CHD, families no longer have to explain themselves at every turn.

Policy Change

Sustained public awareness creates the political will for legislative action and federal investment.

Living With CHD

A lifelong journey.

Medical advancements have dramatically improved survival rates. Today, many children born with congenital heart defects live into adulthood. That is worth celebrating. And it comes with its own complexity. Living well with CHD requires more than surviving surgery. It requires a support system that understands the ongoing nature of the condition.

Repeated Surgeries

Many CHD patients require multiple procedures across their lifetime as they grow and their hearts change.

Lifelong Cardiology Care

CHD does not end in childhood. Adults with CHD require specialized cardiac monitoring indefinitely.

Exercise Considerations

Some patients face restrictions that affect how they participate in school, sports, and daily life.

Mental Health Challenges

Anxiety, depression, and PTSD are significantly more prevalent among CHD patients and their caregivers.

Financial Strain

Medical costs for CHD care can be devastating. No family should face that burden without support.

Transition to Adult Care

Moving from pediatric to adult cardiology is one of the most under-supported transitions in medicine.

How We Respond

Heartbeat Forward exists because awareness without action is not enough.

We were created to address both the medical and emotional realities of congenital heart defects. Not to replace the healthcare system, but to stand inside the gaps it cannot fill. Comfort. Encouragement. Education. Visibility. For a family sitting in a cardiac waiting room at two in the morning, these are not small things. They are everything.

Hospital-Ready Care Packages

Comfort items, educational materials, and age-appropriate tools for children during their most vulnerable days.

Emotional Encouragement

Caregiver resources and family support developed with medical advisors who understand this journey.

III

Creative Expression Programs

Art, storytelling, and play-based activities that help children process their experiences and build resilience.

Public Awareness

Increasing the visibility of CHD so that every family feels less alone and every community understands what these children carry.

Awareness is not optional. It is necessary.

Heartbeat Forward • 501(c)(3) Nonprofit