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 first 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 organizations like the Children’s Heart Foundation and Conquering CHD.
These organizations are dedicated to building awareness, fundraising, and pursuing research to help kids like Meadow live longer, fuller lives.
Lobbying
In spring 2024, I went to Capitol Hill with other CHD advocates to lobby for reauthorization of the Congenital Hearts Future Act.
This will allow the CDC to monitor people with CHD throughout their lives — better data and provide better care as more heart babies grow into adulthood.
Giving
We love supporting other heart families with donations of pajamas and swaddles, books, pantry items, and more. We also help support Norton’s Brave Hearts program for local heart families.
We’ve been through what these families are going through and will do anything we can to help.
Leaving a legacy
When we met the team at Norton Children’s Heart Institute in Louisville, Kentucky, we knew Meadow was in capable hands.
Ben and I recently gave a $15 million legacy gift to the Norton Children’s Hospital Foundation to help them enhance heart care, keep doing innovative research, and bring in the best doctors and specialists.
Want to contribute to the cause?
Make a donation to the children’s heart foundation
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.
INVITE Sarah TO SPEAK
