Daphne Jean was born October 24, 2024, and took her place in the stars January 23, 2025. Forever our smiley, happy three-month-old.

At our 18 week anatomy scan, we were told that Daphne had a heart defect and we would need more examination to find out to what extent her heart hadn’t developed. She was eventually diagnosed prenatally with pLSVC, VSD and a PDA. At one day old she was diagnosed with an ASD, as well. And at 12 weeks old, doctors found cor triatriatrum – an extremely rare and critical CHD.

A week later, we handed Daphne over to a nurse at 8:15 a.m. for her scheduled open-heart surgery. Twelve hours later we were rushed into the pediatric intensive care unit to spend Daphne’s last moments with her. Her surgery didn’t go as planned, and the complications of her surgery took things down the darkest path.

Even with Daphne’s CHD diagnosis, we never felt like we would have to say goodbye. And certainly never so unexpectedly. Her critical CHD, while it would have been fatal if left untreated, was repairable and she would get to go on and live a relatively “normal” life. And even though we put her in the hands of a team we had such confidence in, it just feels like we all got really, really unlucky that day.

Since her passing, we are finding our footing in the CHD world to help do our part to advocate for and raise money to advance research for CHD. No parent should have to go through the pain of losing a child, and even if we can save the life of one child through our support, it'll be worth it.

We continue to be humbled and grateful for the support our family has continued to receive in our efforts to raise awareness for CHD in honor of Daphne.

The Congenital Heart Walk is more than just a walk – it's a step toward changing lives. This walk is all about supporting The Children's Heart Foundation and their mission: advancing the diagnosis, treatment and prevention of congenital heart defects through groundbreaking research.

You are invited to join us in our advocacy and support of CHD awareness and research by walking with us, or donating. These fundraising efforts are essential to drive forward life-saving research. 

Thank you for walking alongside us in this journey. For Daphne and all the heart warriors and angels with the biggest smiles and the bravest hearts.

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Congenital heart defects are the most common birth defect in the world. One in 100 children – that’s roughly one child born every 15 minutes – is born with CHD. One in four children born with CHD will have a critical CHD that requires life-saving surgery within the first year of their life. And to keep going, 25% of those children born with CCHD won’t see their first birthday.

But who knew? We certainly didn’t.

According to the American Academy of Pediatrics, CHD is 50 times more prevalent than childhood cancer. Which means for each one (1) child diagnosed with pediatric cancer, fifty (50) children are born with congenital heart disease.

There is no cure for CHD. Only lifelong monitoring, which includes surgery (and multiple surgeries for so many kiddos), medication and lifestyle management.

Daphne had an extremely rare CHD called cor triatriatum. She also had more “common” CHDs – VSD, ASD, PDA. But her cor triatriatum was a critical one – one that required life-saving surgery.

Cor triatriatum makes up around 0.1-0.4% of all CHDs. Based on a 2005 study, fewer than 250 cases have been documented since its discovery in 1868. Overall, it’s hard to pinpoint exact numbers because it’s so rare. And there isn’t a known genetic mutation associated with it.

Talk about one insanely special girl we got.