A Magazine from Akron Children's
For Connor and Kassi Filkins of Akron, parenthood didn’t turn out like they expected. They lost their 3-month-old daughter, Daphne, due to complications from open-heart surgery. But early in their grief, they knew they wanted to do something special to remember their precious little girl.
Joy radiated from Daphne, and her family is working to keep her light shining.
Kassi’s pregnancy went fine until the 18-week anatomy scan showed an area of concern with the baby’s heart. After the anatomy scan, Kassi and Connor were referred to the Akron Children’s Heart Center for an in-utero echocardiogram.
“From then on, my pregnancy was kind of a roller coaster,” she said. “Things the doctors were watching got resolved, and then new heart-related concerns would pop up. We knew heart surgery would be a possibility for our baby, but we were initially told it wouldn’t be until she was a toddler.”
Kassi had a positive, natural childbirth at Summa Health in Akron. Daphne arrived early the morning of Oct. 24, 2024. The next day, after being discharged from Summa, Daphne had an echocardiogram at the Akron Children’s Heart Center.
Daphne had complex heart disease, including abnormal drainage of the upper veins of her body to her heart and an anatomic separation in one of the main collecting chambers of her heart into two chambers that obstructed blood flow from her lungs. “All of these defects played a part in how her heart functioned,” Kassi said. “Daphne needed surgery way sooner than we originally thought, or her heart problems could be fatal.”
On Jan. 23, 2025, Akron Children’s heart surgeons Drs. Tara Karamlou and Robert Stewart performed open-heart surgery on Daphne, who was just 13 weeks old. “Once the surgeons got in there, the anatomy was even more complex than they expected,” Connor explained. “They had to call a few audibles, and a bleed happened that couldn’t be resolved. They did everything they could to save Daphne, but she passed away.”
Connor and Kassi came home to an empty house, blanketed in grief. “She was such a good baby. She had regular tests and appointments; everything went fine until it didn’t,” Kassi said. “It’s a whole new world you can’t prepare yourself for, and it was hard to find our footing sometimes.”
A youth pastor in Hudson, Connor worried how his church kids would handle their grief. “Kids texted me before and during Daphne’s surgery to wish us well. It was so hard to text their parents, so they could tell the kids that Daphne died,” he recalled. “As a pastor, you’re in the business of hope. But when you’re living in a place of that much trauma and grief, it was hard to make the choice for hope.”
It didn’t take long for Connor and Kassi to know they wanted to do something to help other families in the Akron Children’s Heart Center. “Our ideas evolved over time, but our desire was really strong,” he said. “We knew Daphne was meant to have a great purpose.”
Connor and Kassi started a nonprofit organization called Daphne’s Brave Heart. It aims to further efforts around research, advocacy and family support for kids with congenital heart defects (CHD).
They worked with Matthew Long, major gifts officer of the Akron Children’s Foundation, to begin fundraising for a private waiting area for families whose kids are having heart surgery. “Ducky is a nickname we had for Daphne, so the new space will be called Ducky’s Room,” Kassi said. “We got input from Drs. Karamlou and Stewart on what the room should include. We’re appreciative of their continued partnership, as losing Daphne had to be hard on them as well.”
The goal of Ducky’s Room is to help families feel comfortable and have a sense of privacy while their children have heart surgery. “Losing Daphne was a very difficult day for our operating room team, and of course, for me personally,” Dr. Karamlou said. “But the unrelenting courage and resilience of Daphne’s family and the ability to partner with them in creating Ducky’s Room was incredibly healing. We are grateful that families dealing with challenging situations will be able to spend time in this incredibly comforting space. This is an enduring legacy that will provide so much for the families we serve.”
Plans for Ducky’s Room are still underway, and the special space is set to open in early 2027. “Daphne gave us the biggest smiles, and she had the bravest heart,” Connor said. “Our mission is to keep spreading big smiles for all the brave hearts of the patients at Akron Children’s.”
Daphne’s Brave Heart, in conjunction with the local nonprofit organization First Serve, also provides care bags for Heart Center surgery families. “The bags include a blanket, lip balm and hand lotion, a small journal, a heart-shaped stress reliever, a deck of cards and a note of encouragement,” Connor said. “We want to provide practical items to let families know they are not alone.”
Connor and Kassi welcomed their son, Clarke, in January 2026. They spell his name with an “e” at the end, just like Daphne’s name, and he has a huge smile like his big sister. He is in good health, including his heart.
As Clarke grows up, they will tell him all about Daphne and the impact she had. “Daphne’s attentiveness came through, and joy radiated from her,” Kassi said. “She was larger than life, even when she was here, and that’s still true now. We’ll do our small part to support local families on their CHD journeys, and we’ll work to keep Daphne’s light shining.”
Baby Clarke has a huge smile like his big sister.
From inspiring stories, to medical miracles, the More childhood, please.® magazine will make you appreciate those precious 6,574 days of childhood.
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