Hoping for the best but preparing for the worst means celebrating Christmas in July.
Naomi Reeves was born in March with an ill-formed heart, and as her parents waited for a transplant, they feared she might never get to experience Christmas. So Bethaney and Jared Reeves got their daughter a stocking with her name on it and put bows on her head; they hung ornaments from her bed at Duke University Hospital and surrounded her with small, colorful trees. They read “The Polar Express” to her while temperatures in the Triangle were in the 90s.
Earlier this month, Naomi Reeves got her second heart. Bethaney Reeves said the Cleveland family got the call Aug. 14 while attending church, and by 9 a.m. the next morning, their second daughter was out of surgery and doing fine.
“She’s doing very awesome,” Bethaney Reeves said. “She came off the ventilator quickly; then over the last few days she came off of chest tubes and off of all oxygen. She only has a feeding tube still in her nose. She’s got a great pink color, instead of blue, and has a lot more energy.”
When Naomi was born at Johnston Health in Clayton this past March, she was more gray and blue than rosy and pink. She’d later be diagnosed with hypoplastic left heart syndrome, and doctors said she would need a transplant to survive. For weeks mom and dad drove back and forth to Durham and visited their daughter, seeing her good days and her bad ones and still unsure how things would end up.
“I had been afraid we were looking at a slow fade,” Bethaney said. “I always held hope we’d get a transplant in time, but it wasn’t a given. We learned to really cherish every day with her. We took family pictures, Christmas pictures in July, because we didn’t know what was going to happen.”
North Carolina is in a donor region with South Carolina, Tennessee, Virginia and Kentucky. Bethaney said that all they know about Naomi’s new heart is that it’s slightly larger and that it came from within four hours away by air.
“We hope to get to meet the donor family in the future, but that would be up to them; the privacy of donor families is important,” Bethaney said.
Naomi was taken back at 1:30 a.m. to be prepped and was and out of surgery and back in her room by 9:30 a.m.
“We’re praying people, and we prayed the surgery would go as textbook as possible,” Bethaney said. “The surgeon said it went exactly as he expected it to. I told him we prayed for a boring surgery.”
Bethaney said Naomi would likely spend another week in intensive care, then be moved to a regular room. After that, they could be taking her home for the first time in a few weeks. She’ll be on immunosuppressants for the rest of her life, and she’ll undergo regular biopsies and ultrasounds of her new heart. Germs are a big deal, Bethaney said; an ordinary cold could put them back in the hospital. Beyond that, the Reeves hope their daughter can find her own normal.
“We may discourage her from contact sports, like football or taekwondo, but we want her to live as normal a life as possible,” Bethaney said. “We want her to pursue whatever she wants.”
Now the Reeves are hoping to build awareness for organ donations and transplant support organizations, like the Children’s Organ Transplant Association, which is helping them with the costs of the transplant. In honor of Naomi’s transplant, the group is looking to raise $100,000 locally. In June, a Clayton girl hosted a lemonade stand at the Pritchard Road Food Lion near Riverwood, raising more than $5,000.
After Naomi’s transplant, no other infants under a year old are waiting for a heart in North Carolina, according to U.S. Department of Health and Human Services data. However, more than 3,000 people in the state are waiting on some kind of transplant, including 79 people under the age of 18.
“I hope our story encourages others to be organ donors,” Bethaney said.
Drew Jackson: 919-553-7234, Ext. 104; @jdrewjackson