“It can be repaired.”

I was 19 weeks into my pregnancy when I finally heard those words – the very first glimmer of hope for my unborn baby. Up until then, every appointment had led to more specialists, more tests, and more uncertainty. Termination was mentioned so often it began to feel like the only option on the table.

That day, sitting in a conference room at Boston Children’s Hospital with my husband, the fetal cardiologist, and a nurse, I braced myself for devastating news. Instead, I felt a tiny seed of hope planted.

The diagnosis: congenital heart disease (CHD) caused by a large ventricular septal defect (VSD) and a left superior vena cava.

Before that moment, my knowledge of CHD was limited. I’d heard stories from a friend whose sister had heart surgery and a colleague whose daughter had a heart condition – but I didn’t realize CHD was the most common birth defect, affecting 1 in 100 babies. Suddenly, I was thrust into a CHD diagnosis during pregnancy, trying to balance fear with hope.

The road to diagnosis was relentless. After an early ultrasound revealed a thickened nuchal fold, we were told, “You’re going to be faced with some tough decisions.” Soon after, the diagnosis shifted to a cystic hygroma with an 80% chance of genetic or structural complications. We were offered a chorionic villus sampling (CVS) test on the spot. The risks – including miscarriage – were terrifying, but we felt cornered into saying yes.

The wait for results was agonizing. When they came back, we were told: “We’ve ruled out genetic issues, but that doesn’t rule out structural or cardiac problems. We’ll need another ultrasound in two weeks.”

Two weeks later, the cystic hygroma had resolved. For a brief moment, relief washed over me – until the doctor added, “We suspect there’s something wrong with the baby’s heart. We want to refer you to pediatric cardiology for further testing.”

It felt like wave after wave of bad news, with no support, no guidance, and no hope for the future. My visions of a happy pregnancy and healthy baby were gone. I began to wonder if I’d ever hold my child at all.

Everything shifted when we transferred to pediatric cardiology at Boston Children’s Hospital. For the first time, someone met us with both clarity and compassion. A nurse named Linda sat with us for hours, explaining the diagnosis, what surgery would involve, and what life might look like after. She answered every question from “Will I be able to hold him after he’s born?” to “Will he be able to play sports, go to school, run with his friends?”

That encounter didn’t erase our fear, but it gave us something equally important: hope.

As a heart mom, here’s what I wish every provider knew when supporting families through the shock of a CHD diagnosis.

Lead With Empathy

• Validate emotions: “It’s okay to feel scared, overwhelmed, or numb.”
• Recognize the family’s emotional state—not just the medical facts.
• This is where trauma-informed care makes all the difference.

Provide Clear, Compassionate Information

• Avoid jargon; explain terms in plain language.
• Share essentials first, then build in details once parents are ready.
• Provide take-home materials: written notes, diagrams, or resource links.

Ensure Immediate Support

• Connect families with social workers, CHD nonprofits, or peer mentors.
• Encourage building a personal support system.
• Normalize mental health care—therapy is a vital tool for parents, not a weakness.

Normalize the Long Journey

• Set realistic expectations: CHD is lifelong, not a one-time surgery.
• Highlight resilience: many CHD families discover unexpected strength, joy, and community.
• Share stories that remind parents they are not alone in this congenital heart defect journey.

Fast forward six years, and my son is thriving. He just started kindergarten, plays t-ball and soccer, and has more energy than I do after two cups of coffee.

When I look back, I wish I could hug that pregnant version of myself – the one sitting in hospital offices, terrified and uncertain – and whisper: “The future you’re praying for will come true. And it will be even sweeter than you could imagine.”

You don’t have to walk this road alone. These resources can help:

• Ollie’s Branch – Free mental health services for CHD families
• OHHF for Families – Peer connection and support networks
• CDC – Facts about congenital heart defects
• Boston Children’s Hospital – Congenital Heart Defect Program

Clinicians: the way you deliver a CHD diagnosis sets the tone for a family’s journey. Your words can either deepen the trauma or plant seeds of hope.

For my family, that moment of empathy at Boston Children’s changed everything. And for every family who will sit in a consultation room after me, I hope your words carry the same compassion, clarity, and care.

If you’re a parent or clinician navigating CHD, explore more resources, peer connections, and mental health support at the Ollie Hinkle Heart Foundation.