Beulaville family turns loss into legacy

BEULAVILLE — May marked the first year since Miley Byrd, a 19-month-old from Beulaville, lost her battle with Hypoplastic Left Heart Syndrome — a condition where the left side of the heart doesn’t form properly. Miley spent much of her life in Duke Children’s Hospital, undergoing two open-heart surgeries and awaiting a heart transplant.

Today the Beulaville community continues to remember the brave little girl whose fight touched so many hearts. Since Miley’s diagnosis, her family — Chelsea and Ryan Byrd, along with her siblings Hudson and Emerson — leaned on their faith and the outpouring of community support. Chelsea, a teacher at Beulaville Elementary, and Ryan, a home health nurse, have transformed their deep personal loss into a mission of hope, support, and legacy for others.

“Learning that Miley was growing in my womb with half a heart was devastating,” said Chelsea. “The journey has been one that has depleted our emotions at times and tested our faith certainly. During the time that Miley was alive, we really chose to place our trust in God that He would sustain her and keep her.”

In the face of adversity, the community became a beacon of hope, where friends, family, and even strangers rallied together, organizing fundraisers, donating leave, cooking meals and sharing words of encouragement. This generosity became a lifeline during long hospital stays.

“Our community really pulled together to support us during the time that we were waiting for Miley’s arrival, and especially during the last hospitalization where we both were out of work, caring for Miley at Duke,” said Chelsea. “It was overwhelming and humbling to see how much our community cared.”

Miley’s story resonated deeply, not only inspiring others but also bringing the community closer.

The Byrds expressed tremendous gratitude for all the support and for genuinely believing in a miracle for Miley. Ryan shared that many people told him that their faith had been reinforced because Miley.

As both parents grief the loss of their youngest child, they hold tightly to the cherished memories she left behind. For Chelsea, it was the awe-inspiring resilience she demonstrated and the little miracles. “The moments that she defied odds,” said Chelsea. “Watching her learn to eat by mouth after relying on a feeding tube and being weak from open heart surgeries, learning to crawl and walk and talk and do all these things sooner than doctor’s thought she would.”

For Ryan, the sweetest memories are wrapped in the sound of laughter as Miley played with her older brothers. “Miley adored her older brothers so much. Watching her climb all over them and go for ‘blanket rides’ will be memories that I will cherish forever,” Ryan explained, adding that even when her little body was weary, “she kept a smile on her face and loved to be silly.”

Dave Witter, an associate pastor at Beulaville’s Grace Covenant Church, witnessed firsthand how the Byrd family spent countless hours navigating Miley’s care and grappled with the depths of their grief following her death. Their journey, though marked by profound sorrow, has also been filled with an unwavering commitment to honoring Miley’s memory in powerful and meaningful ways.

In honoring Miley, the Byrd family took a significant step by focusing on a project that would leave a lasting impact on other children facing similar struggles. This initiative involved funding and establishing a playroom in the pediatric cardiology ICU at Duke Children’s Hospital, where Miley spent much time. Ryan told Duplin Journal that the idea came about during Miley’s last hospital stay.

“She was feeling well enough to get out of her hospital room for a little while. The nurses got her out of bed and ready to go visit a playroom that was on another floor,” said Ryan, explaining that as Miley was being wheeled down the hallway, one of her doctors came running down to stop them, expressing concern about her leaving the unit.

“From that moment on, we knew it was our mission to see a playroom built on the 3rd floor in the PCICU. With the support of our community, family, and friends, the playroom was able to be completely funded. To see that dream come to fruition has been amazing.”

The room, now a tribute to Miley, was completed and opened in February, with a special ribbon-cutting ceremony led by her brothers.

“This was a very special moment for Hudson and Emerson. One of their favorite things to do when they visited Miley in the hospital was to play with her. Whether it was in her hospital bed or on the floor of her hospital room, they would make the best of what they could. To see a playroom now in that same unit that she was in and for them to be a part of making it happen is such a perfect way to honor their little sister. The ribbon-cutting, dedication service, and just getting to the playroom firsthand was just the icing on the cake,” said Ryan.

In addition to creating a playroom, the Byrds established the Miracle Miley Research Fund to support research into single ventricle defects. Their goal is to raise $100,000 to help fund advancements that may one day provide more options for families facing similar challenges.

“We saw a problem and knew that we could help [create] a solution,” said Chelsea, expressing that frustration with the lack of research funding for single ventricle defects led to the fund’s creation.

“We had a very generous and big-hearted donor approach us about the Miracle Miley Research Fund and their desire to see it reach its full potential,” said Ryan. “With their contribution, up to $25,000 of donated funds will be matched and will go directly to single ventricle heart research.”

So far, the initiative has garnered significant support, largely thanks to the generosity of an anonymous donor who is offering to match donations. This effort has already raised more than $15,000 in just a few days.

Witter spoke about the family’s commitment to the research fund, emphasizing their understanding of the limitations they experienced due to Miley’s medical condition after their doctors reached the end of their treatment options.

“And for a parent, you can imagine what that’s like to hear those words,” Witter told Duplin Journal, adding that despite the grief they are experiencing, they are doing everything they can to make a difference.

The Byrds told Duplin Journal that their goal with the research fund is to help those born with single ventricle hearts live longer, fuller lives. The family explained that Miley’s anatomy made it challenging for doctors to manage her life support systems, which included ECMO, VAD, a ventilator, and dialysis.

“Many complications arose due to her ‘Glenn Anatomy.’ We know that currently, research is being done in specific areas of single ventricle heart defects,” the family shared. “We hope that ground-breaking discoveries are made that directly improve lives and increase the lifespan of those living with SV hearts.”

Honoring Miley’s life has brought a newfound purpose for the Byrd family as her story continues to make a difference, transforming grief into hope and a legacy that supports medical advancements that may change the future for other families.

“Miley meant so much to so many people. To see her life and memory continuing to make such an impact on people’s lives is incredible,” said Ryan, adding that God is using her life to make a difference in ways that they could have only imagined.

“Never stop believing for a miracle, even when it doesn’t come in the way you had hoped for or expected,” said Ryan. “Every day that Miley lived was a miracle. God’s hand was on her life until her very last breath. Now Miley is healed and whole and in Heaven, and in the words of my son Emerson, ‘she’s in the best place ever.’”

Visit this link to learn more about the Miracle Miley Research Fund.