February Is Heart Month: Why It Matters for CCHD Families

Every February, the symbol of hearts are everywhere.

They show up in store windows, on greeting cards, in classrooms, and across social feeds. We celebrate love, kindness, and connection during American Heart Month — but for many families, the heart is not a symbol. It is a daily reality.

For families affected by Complex Congenital Heart Disease (CCHD), February is more than a celebration. It is a reminder of why awareness can save lives.

What Is CCHD — and Why It’s Different

Complex Congenital Heart Disease (CCHD) refers to a group of the most severe heart defects present at birth. These conditions affect how a newborn’s heart forms and functions, often limiting oxygen delivery to the body within hours or days of life.

Unlike some heart conditions that can be monitored over time, CCHD is urgent. Babies with CCHD frequently require:

• Surgery or catheter-based intervention in the first days or weeks of life
  

• Intensive monitoring in a neonatal or cardiac ICU
  

• Ongoing cardiac care throughout childhood and adulthood
  

And without early detection, some of these babies may not survive their first days at home.

The 60-Second Test That Can Change Everything

One of the most important advances in CCHD care is also one of the simplest.

Pulse oximetry screening is a painless, non-invasive test that measures the oxygen level in a newborn’s blood using a small sensor placed on the baby’s foot and one on the baby’s finger. It takes about a minute.

That minute can mean the difference between life and death. And it did for my daughter! I will be ever grateful to the nurse who performed this test which led to the discovery that my child was born with the most severe heart defect a person can have- HLHS. She was immediately brought into the NICU to await surgery. 

Before this screening became standard, many babies with CCHD were discharged from the hospital appearing healthy — only to go into crisis at home. Today, pulse oximetry helps identify many of these critical defects before symptoms become catastrophic. In my case, doctors told me that if I had taken my daughter home, she would have died that night.

Thanks to advocacy and awareness, this screening is now widely adopted. But awareness still matters — because parents who know what CCHD is are more likely to ask questions, recognize warning signs, and push for testing when something feels off. But those parents who don’t know anything about heart defects wouldn’t think to ask, and for me, this test saved my child’s life.

Why Heart Month Is the Right Time to Talk About CCHD

February gives us a rare opportunity: People are already thinking about hearts.

This is the moment to shift the conversation from symbolic hearts to real ones — the tiny, fragile hearts of newborns who need early detection, expert care, and ultimately, better solutions than repeated surgeries.

CCHD awareness during Heart Month helps:

• Educate new and expecting parents
  

• Encourage hospitals and providers to maintain rigorous screening
  

• Highlight the reality families live with long after diagnosis
  

• Advocate for research that goes beyond management and toward cures

Because while screening saves lives, it does not fix the heart.

From Detection to Cure

Early diagnosis is a critical first step. But for families living with CCHD, the journey does not end after that first surgery.

Children with complex heart defects often face:

• Multiple open-heart surgeries
  

• Lifelong medications and monitoring
  

• Increased risk of heart failure later in life

This is why awareness must go hand in hand with research.

At Building the Cure Foundation, Heart Month is a call not only to recognize CCHD — but to imagine a future where children born with these conditions won’t need a lifetime of repair. Where regenerative medicine and stem cell research offer something families have never had before:

The possibility of a TRUE CURE.

How You Can Honor Heart Month

This February, you can make hearts matter in a deeper way. One easy way is to share the stories of CHD and CCHD families to spread awareness.

Most critically, you can help support research aimed at healing hearts, not just managing them. Make a donation at buildingthecure.org to start saving lives today. 

Because for thousands of families, hearts are not decorations. They are the reason we fight for something better.

And February is the perfect time to start that conversation.