In 2016, Bethany Reeves scheduled a “Christmas in July” photoshoot—fully aware that her newborn baby girl, Naomi, might not make it to December 25.
“When Naomi was born on March 22, 2016, she was a beautiful, terrifying shade of blue,” recalled Bethany. “Six hours after birth she was being life-flighted from Clayton to Chapel Hill. My husband and I followed in a car, and once we got there, we were told by the doctor that our daughter had a ‘unique, one-of-a-kind heart.’ Not something you want to hear.”
Naomi was diagnosed with hypoplastic left heart syndrome (HLHS). Due to other complications, she was not a candidate for reconstructive surgery and was placed on the transplant waiting list at 2-weeks-old.
“She wasn’t able to come home with us,” said Bethany. “She lived in the hospital from that point on. It was very surreal.”
As a way of coping, Bethany did plenty of research, eventually transferring Naomi’s care to Duke.
“I found that Duke had done a lot more infant heart transplants, so I facilitated the change while we were waiting,” she said. “I guess I approached it from a rational, practical ‘I don’t have time to fall apart mindset. I pretty much lived at the hospital. I would get there in the morning, be there all day, and leave in time to be home for my oldest daughter.”
Bethany says she had to learn to hold Naomi “with a completely open hand,” trusting that everything would happen when it was meant to happen.
“I couldn’t control anything,” said Bethany. “The situation was precarious, so she didn’t get to do any of the normal baby stuff. As we got to the end of July, it felt like she was getting tired. We did a photoshoot and a fundraiser because we really didn’t know that she would make it to her first Christmas.”
Just a month later, on Sunday, Aug. 14, 2016, Bethany received the call that would forever change their lives. “That evening we had a church small group with about six other families. My phone rang and I went into the bathroom to take the call. The doctor said they had a heart that they felt was a good match for Naomi, and that we needed to get there as soon as we could. I remember crying for the donor family. It hit me that there was a family who was really broken, but they were strong and brave enough to share with us.”
Bethany and her family went straight to the hospital, where they “loved on Naomi” and waited until she went into surgery around 1 a.m. on August 15.
“When we were finally able to go in and see her, she was pink for the first time in her life,” said Bethany. “Even as heavily sedated as she was, she was kicking her feet with more energy than she had ever had. It was an immediate change. Once that new heart was in, she was like a tornado in skin. The change was remarkable, even just her attentiveness and her willingness to engage with other people. We were able to enjoy interacting with our child for pretty much the first time, even though she was almost five months old.”
Since her transplant, Naomi has only experienced one episode of rejection, which took about four weeks to get under control. Her good health continued until 2023, when she unexpectedly caught the Epstein-Barr virus over Halloween.
“It ramped up her lymphatic system to the point where she developed post-transplant proliferative disorder, which is basically lymphoma,” said Bethany. “Starting this past January through the end of March she went through treatment and is now in remission.”
Although small in stature, Naomi Reeves is as tough as nails—her mother jokingly describing her as “Dennis the Menace plus Donnie Thornberry.” She enjoys ninja warrior classes, where she easily conquers the 12-foot wall and climbs or swings on anything within reach.
“She’s a force of nature,” said Bethany, laughing. “She’s just Naomi. She’s one of those kids where if you didn’t know, you wouldn’t know, because she’s just so active and vivacious.”
Despite enduring medical trauma, Naomi lives as normal of a life as possible. “I think she grasps what happened,” said Bethany. “She knows that the heart inside of her is not the heart she was born with, and that it came from a little girl who died and it’s our job to take care of that heart—but she doesn’t dwell on it.”
Today, Naomi is 8 years old and enjoying third grade—all because another family made a hard decision in their darkest moment. Bethany, who wrote the donor father, will forever be thankful that he was willing to share life with other children through his loss.
“I’m so thankful that we have the medical technology to share with people who need it, and that some kind of good can come out of something so horrific,” said Bethany. “I think of the Tibetan phrase, ‘Never let defeat have the last word.’ It kind of feels like that.”
Since their experience with organ donation, Bethany feels a responsibility to talk about it openly and educate others. “I was always listed as an organ donor on my license, but until Naomi, it had never touched me. Fortunately for us, Naomi is the poster child of what life after transplant can be. She doesn’t have a G-tube anymore, she doesn’t have a trach, and she doesn’t live in a hospital waiting for a second transplant. I’m grateful for that, and I try to live in a way that’s mindful of that. We’re aware of the gift that we’ve been given—not just time, but quality time, that we would not have had without donation.”
As a reminder of her resilience, Naomi is involved in the Beads of Courage program—an arts in medicine nonprofit that provides a fun and easy way to empower children coping with serious illness.
“Every needle poke, every x-ray, every clinic visit, she earns a bead,” said Bethany. “Each bead color symbolizes what she has been through. She has about 40 feet of beads at this point. It is a powerful, visual representation of everything she has endured. It’s something she is very proud of, and I am as well. She’s very determined. It feels like she has been determined since the moment of birth—and with her new heart, she can now fully express it.”
75 or more lives can be saved and healed by one organ, eye, and tissue donor. Register your decision at honorbridge.org/registerme
