Toddler with rare heart condition gives back to local pediatric patients
Her parents like to say that toddler Naomi Reeves was born with a broken heart.
Naomi, 1, was born on March 22, 2016 in Smithfield Johnston Memorial Hospital, part of the UNC Health Care system, to a family from Garner. Her parents are Jared and Bethany Reeves.
“We didn’t know that she needed any type of help with her heart until she was born,” Jared Reeves said.
Naomi Reeves was born blue.
“They took her away to do measurements and do an echocardiogram of her heart. They actually Livestreamed that to UNC and their technician was able to identify what the issue was, why she wasn’t getting the oxygen she needed.”
At 12 hours old, Naomi was airlifted to Chapel Hill. Jared and Bethany Reeves waited – helpless –to hear what was wrong with their daughter.
The parents were approached by UNC Health Care cardiologist Dr. Michael Mill, who said, “Mr. and Mrs. Reeves, your daughter has a unique and one-of-a-kind heart.”
“And we thought, ‘That is exactly NOT what we want to hear,’” Bethany Reeves recalled.
“Huh, right,” Jared Reeves agreed. “He told us it wasn’t just one issue. For hypoplastic heart syndrome, they usually do a series of three surgeries.”
Hypoplastic heart syndrome is a condition in which only one half of the heart develops properly.
“But with her, it was a little bit more unique than that, because in addition to that, there were additional complications,” Jared Reeves said. “Aortic stenosis, subvalvular aortic stenosis ...”
“... mitral valve regurgitation,” Bethany Reeves added.
“Right,” Jared Reeves said. “Basically, there were some leaky valves going on and they couldn’t rely on the side of her heart that was developed to compensate.”
In short, Naomi was not a candidate for reparative heart surgery and her only option for survival was a transplant. Her care was transferred to Duke Health.
Naomi spent 145 days on the waiting list for a new heart. The wait was tedious. Naomi stayed in Intensive Care for five months. Her parents anguished.
Jared and Bethany Reeves wanted to keep “life as structured as possible” for their eldest daughter, three-year-old Kathryn Reeves. Bethany Reeves took short-term disability leave from work.
She would drive from Garner to Durham in the morning six days a week, stayed in ICU until it was time to pick up Kathryn, spend the evenings with Kathryn at home in Garner, sleep, wake up, take Kathryn to day care and drive back to Duke to be with Naomi trapped within a sterilized ward surrounded by white, sanitary hospital walls.
Just shy of her five-month birthday, Naomi received a new heart.
“Heart transplants can often be more difficult in children, because children’s hearts are often abnormal to start with,” said Dr. Michael G.W. Camitta, an Adult Congenital Heart Disease Specialist, Pediatric Cardiologist with Duke Health. “Most of the heart transplants in adults are structurally normal hearts. If they are built normally, as with adults, then there is a problem with how they function. In adults, typically the pumping function of the heart decreases and the heart can’t keep up with what the body needs.”
From a surgical standpoint, heart transplants in children are more technically challenging and higher risk procedures than adult heart transplant surgeries.
Camitta said of a child patient, “Their heart is not put together normally ... It’s sort of like fancy plumbing.”
If all the plumbing is built with standardized pieces of pipe, then the malfunctioning pipes can be replaced with matching standardized pieces. But, if the plumber — or in this case cardiologist — must work with custom-made pipes, custom fittings are also required.
“If parts of the heart are not connected normally, when you go to put a completely normal heart in, you have to do things differently,” Camitta said.
Naomi “came home” to Garner for the first time, five days short of turning six months old and must take medications every day for the rest of her life to ensure her body doesn’t reject her transplanted heart. She’ll need regular biopsies of the heart and special check-ups as well.
“She was a patient here for the first six months of her life,” Bethany Reeves said while standing in Duke University Hospital Friday. “We want to honor her reaching her first birthday and honor her donor by giving back in a practical sort of way to the families here. Because we’ve been here. We know how hard it is to live in this place. And we want to do one thing that we can, to make it a little bit easier.”
The Reeves collected 198 donated gift cards to eateries like Starbucks, Chick-fil-A and Subway that operate stores in the hospital, online gift cards for Amazon and gift cards for gas at BP stations and doodad shopping at Target with an approximate accumulated value of $2,500. The gift cards were bundled into 16 care packages along with encouraging notes, and a Beanie Baby apiece, to be given to the current kids staying in the Duke University Hospital Pediatric Cardiac Intensive Care Unit for Children.
“There are 16 rooms in PCICUC here at Duke and more often than not, they are all full,” Bethany Reeves said. “Each family will get one of those and a little encouraging note to hopefully make their day a little bit brighter.”
Ninety-five percent of Americans support organ donation but only 54 percent of Americans are registered donors, Bethany Reeves said, “And that’s something to take care of now, before you’re unable to make that choice.”
April is National Donate Life Month and having a little heart printed on your driver’s license “is a great start” but people can also register as organ donors online, Bethany Reeves said. There are different levels of organ donation. For instance, a person may register to only donate their major organs.
One organ donor can save eight people’s lives.