What I Wish People Knew About Congenital Heart Disease

Owlet Cares is our advocacy initiative that is dedicated to making a positive impact in the lives of babies and parents. One way we do this is by partnering with nonprofits all over the world who share our mission. 

Each month, we shine a spotlight on one of our foundation partners and the important work they are doing. This month in honor of CHD (congenital heart disease) Awareness Month, we’d like to introduce you to Conner Hill, co-founder of the Stronger Hearts Foundation - an organization dedicated to helping families of children with CHD. 

In his words, here’s his family’s story. 

Congenital heart disease, or CHD, became part of our lives the moment we learned our son Dawson had Hypoplastic Left Heart Syndrome. CHD is not just a diagnosis. It is a lifelong journey that reshapes your family, your priorities, and how you see the world. Our story is personal, but it reflects the reality many families quietly live every day.

Dawson’s Story

Dawson’s CHD journey started before he was even born. What we thought was a routine pregnancy quickly turned into frequent appointments with fetal cardiology. We learned new terminology overnight. We learned how to ask the right questions. We learned how to live with uncertainty.

After birth, Dawson faced multiple open-heart surgeries, long hospital stays, and time in cardiac intensive care units. We watched him connected to machines that kept him alive. We learned how to read monitors, recognize warning signs, and advocate for him when something didn’t feel right. We celebrated milestones that most families never have to think twice about. A stable oxygen reading. A good echo. The ability to wean off of a feeding tube.

Leaving the hospital didn’t mean the journey was over. It meant the responsibility shifted. We became part caregiver, part nurse, part case manager. Medications. Feeding plans. Follow-up appointments. Emergency protocols. Every decision felt heavy because it mattered. Through it all, Dawson showed strength that still amazes us. He fought hard. He smiled through discomfort. He reminded us every day why this work and this story matter.

What I Wish People Understood About CHD

First, CHD isn’t rare, and it doesn’t end at discharge. CHD is the most common birth defect in the world, impacting 1 in 100 babies*. It affects families everywhere, even if you don’t see it. It is also lifelong because surgery is not a cure, but rather a lifelong treatment pathway with continued risks, routine testing, and medication. Children with CHD require ongoing care, monitoring, and parental training long after hospitalization ends. Families are taught how to recognize symptoms, manage equipment, and respond to emergencies at home. That responsibility doesn’t fade with time. It becomes part of daily life.

Second, CHD tests everyone involved. It requires strength not just from the child, but from parents and guardians too. It strains relationships. It challenges mental health. It creates financial pressure from time off work, travel, lodging, and medical costs that add up fast. Parents are expected to function, work, and care for other children while living in a constant state of alertness. It is exhausting in ways that are hard to explain unless you have lived it.

Third, social work, nonprofits, and support organizations are not optional. They are essential. Hospital social workers help families navigate housing, transportation, insurance, and emotional support. Nonprofits step in to cover gaps that insurance never will. Lodging. Meals. Care packages. Emotional relief. These organizations lift some of the burden so families can focus on what matters most, keeping their child safe and loved.

How People Can Help

Support does not require medical expertise. It requires intention.

1. Listen first. Ask how families are really doing and be willing to hear the hard parts.

2. Offer specific help. A meal delivery. A gas card. Childcare for siblings. These things matter more than people realize.

3. Learn about CHD. Awareness leads to advocacy, better funding, and stronger systems of care.

4. Support nonprofits and organizations that work directly with CHD families. These groups often operate quietly, but their impact is immediate and real.

CHD changes your life forever, but it also shows you what resilience looks like. It teaches you how strong a child can be and how much love a family can hold. Dawson’s journey is still unfolding, and so is ours. We share our story not for sympathy, but for understanding. Because no family facing CHD should ever feel alone.

*CDC - About Congenital Heart Defects

The content provided on this blog is intended for informational and educational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of a qualified healthcare provider with any questions you may have and to learn more about your child's specific needs.