All of Naomi Reeves’ ultrasounds looked normal, but when she was born on March 22, she was blue.
Twelve hours after her birth, the second child of Bethany and Jared Reeves was flown from Johnston Health in Clayton to UNC Medical Center in Chapel Hill. Doctors determined that the left side of her heart hadn’t formed properly, a rare congenital heart defect called hypoplastic left heart syndrome.
“Naomi has a list of about 22 things wrong with her heart,” said her mother, Bethany Reeves. “Doctor Michael Mill, a pediatric cardiologist at UNC, told us, ‘Your daughter has a one-of-a-kind, unique heart,’ and I thought, ‘Well, crap.’ ”
At 2 weeks old, Naomi was placed on the heart-transplant list. She was moved from UNC to Duke, and Bethany drives from Clayton to Durham every morning to spend the day with her daughter. Though Naomi has known only hospital rooms and has never felt sunshine, Reeves said her daughter is remarkably normal. She smiles, she cries, she fusses when someone wakes her up.
“We try to keep life as normal as we can,” Reeves said. “I read her books, hold her; we do the best we can do for her.”
Bethany said “Naomi” is a family name that never was; that her great-grandmother always wanted a daughter named Naomi but that the name always got a male veto in the end.
“All the men in her life always got in the way,” Reeves said. “When my mother told me that story, I knew I wanted to name a daughter Naomi. I think it’s time for little granny to get her Naomi.”
The realities of organ transplants are always grim; it’s a hope that depends on a darkness, one family’s fortune born from another’s tragedy. Bethany said doctors have told her the mortality rate for infants on the transplant list is about 50 percent.
According to U.S. Department of Health and Human Services data, so far this year, eight pediatric heart transplants have been performed in North Carolina. Five infants under a year old are waiting for a heart in the transplant region that includes the Carolinas, Tennessee, Virginia and Kentucky.
“We tell her we love her every day, because we don’t know what’s going to happen moment to moment,” Reeves said. “I’ve heard of infants who were on the list for two days before they got a heart and others who waited eight or nine months.
“We are praying and hopeful a heart will come every day. We sleep with our phones, shower with our phones; we have a suitcase packed and ready to go when the call comes. We want that gift but recognize at the same time something tragic has to happen to another family.”
The Reeves have partnered with the Children’s Organ Transplant Association, a group that offers financial help to transplant families. They’re collecting donations for the organization in Naomi’s name, and this Saturday, a lemonade and cookie stand will help pay for a heart transplant. The stand is the idea of 9-year-old Anna Coley, whose family attends Cross Point Community Church in Knightdale with the Reeves. The lemonade stand began as an end-of-the-driveway thing and grew steadily into a full-fledged fundraiser in the Food Lion parking lot near Riverwood Athletic Club.
“I thought lemonade is a popular drink in the summer when it’s hot,” Coley said.
Coley designed a temporary tattoo of a heart inside of another heart reading “Naomi’s Heart Journey,” and her mom, Kellie Coley, said other members of the church have committed cookies and lemonade mix for the fundraiser.
“I wanted to help out, because I wanted Naomi to get better,” Coley said. “I wanted to meet her and wanted her to get to go to her actual home.”
The lemonade stand will be open from 10 a.m. to 12 p.m. Saturday, June 25, in the Food Lion parking lot located at 238 Pritchard Road, Clayton.
Drew Jackson: 919-553-7234, Ext. 104; @jdrewjackson