I’m An Advocate At Heart.
In August 2022, my daughter, Meadow, was born with an incredibly rare congenital heart defect.
Without any warning, my husband, Ben, and I became “heart parents.”
We’ve dedicated ourselves completely to ensuring Meadow has the best care, but it’s never been just about Meadow!
We’re also giving back to causes committed to raising awareness about CHD, advocating for more research funding, and working to give kids like Meadow longer, more fulfilling lives.
Meadow’s story
I was 36 weeks pregnant with Meadow when we found out she has a combination of four congenital heart defects.
Congenital heart defects are the most common birth defect, but she had a one in 10,000 chance of developing tetralogy of Fallot with pulmonary atresia. (That’s the same odds of finding a four-leaf clover, which is why I have a clover in my logo!)
Even as a nurse practitioner, I was completely overwhelmed when our new reality charged in.
Meadow had her first open-heart surgery when she was just 6 days old. At 4 months, she had her full repair. We lived in the hospital for three months.
The team at Norton Children’s Heart Institute took amazing care of her and us (they still do!). Meadow’s doing great now… Today, she’s a whirlwind we can barely keep up with.
She’s slated to have at least four more heart surgeries in her lifetime, but the more we dive into CHD advocacy, the more hopeful I am that she has many years ahead of her.
My work as a heart parent
Congenital heart defects are 60 times more prevalent than pediatric cancer, but they get a fifth of the research funding.
I’m doing my part to change that... Here’s how.
Volunteering
I'm involved with the Children's Heart Foundation, Conquering CHD, and Every 100th Heart, a national coalition uniting the CHD community under one voice at the federal level. I serve on the board of directors of Every 100th Heart.
These organizations build awareness, fund research, and create the coordinated infrastructure that helps kids like Meadow live longer, fuller lives.
Lobbying
CHD affects 1 in 100 babies; the most common birth defect in the U.S. and one of the least funded. I've traveled to Capitol Hill to lobby for the Congenital Hearts Future Act, which directs the CDC to track people with CHD across their full lifespan. Better data means better care.
Through Every 100th Heart, we're building the coalition to ensure the CHD community speaks with one unified voice when it matters most.
Giving
We support heart families in the ways that matter most: donations of pajamas, swaddles, books, pantry items, and more. We also support Norton's Brave Hearts program for local heart families navigating what we once navigated ourselves.
This is still our life too. And because of that, we'll do anything we can to make it a little easier for the families walking this road with us.
Want to contribute to the cause?
Why this work matters
The Work is Working. And There's So Much More to Do.
Congenital heart disease affects 1 in 100 babies, making it the most common birth defect in the United States, and also one of the least funded. For most of the 20th century, a CHD diagnosis came with devastating odds. In 2009, for the first time in history, more adults were living with CHD than children. That statistic sounds like a milestone, because it is. But it also means these children were surviving into adulthood for the very first time, and the systems to support them across a full lifetime largely didn't exist yet.
The shift in outcomes is real and it is personal. A close friend of mine was born in the early 1990s with pulmonary atresia, the same diagnosis as Meadow. Her odds of surviving into adulthood at the time were around 60%. She is 35 years old. For children born with the same condition in 2022, that survival rate is now closer to 90%. That difference exists because of sustained investment in research, surgical innovation, and coordinated advocacy.
Meadow's pacemaker (placed just three years ago) is already obsolete. They don't use that model anymore. That is how fast this is moving.
The next challenge is organization
There are hundreds of CHD organizations doing meaningful work across the country. But when we show up in Washington to advocate for funding, we often show up fragmented: different asks, different dollar amounts, competing for the same attention.
That is starting to change. And that is why we must continue the work.
Leaving Something Behind
OUR GIFT
When you spend enough time in a cardiac unit watching your child fight for her life, it changes how you think about money, about legacy, and about what it means to do something that actually lasts. In 2024, Ben and I made a $15 million legacy gift to Norton Children's Hospital to establish the Norton Children's Heart Institute — Boes Family Congenital Heart Center, named in honor of Meadow Emma Lou. Norton performed the second pediatric heart transplant ever. That legacy of innovation is what we wanted to invest in and help carry forward.
The hospital honored the gift with a mural of Meadow that will live inside those walls for years to come. I don't share this to impress anyone. I share it because if you are a researcher, a clinician, or an organization with a project worth funding, I want to be in that conversation.
Every 100th Heart
One of the most significant things I've worked on launched in February 2025: Every 100th Heart, a national coalition bringing CHD advocates together under a unified voice. When the CHD community goes to Washington, we need to speak with one voice and make one ask. Every 100th Heart is how we get there. I serve on their board of directors.
They host regular advocacy days in Washington, and your presence at those events matters more than you know.
Education is everything
My experience as a nurse practitioner, educator, and heart mom has given me a unique perspective on CHD and how to navigate it.
If your CHD organization or heart parent group is meeting, I’d love to share my experience and educate your audience about life as a heart parent and how to advocate for kids with CHD, both in the doctor’s office and out in the world.
