After 13 surgeries, Zoey Jones was still facing a heart-lung transplant, but doctors in Ohio figured out another way to treat her serious birth defects.
Most 3-year-olds face challenges like mastering a tricycle or learning a few letters of the alphabet.
For Zoey Jones, it was the possibility of a heart-lung transplant.
The 3-year-old Tennessee girl had already endured a lifetime of intense medical care due to a worsening heart condition. The complicated transplant seemed like the only treatment option.
But a trip to Nationwide Children’s Hospital in Columbus, Ohio, radically changed the course of Zoey’s life.
A procedure accomplished what many doctors thought was impossible; Zoey was removed from the transplant list.
Before her birth, Zoey’s parents were prepared to meet a daughter with some serious medical issues.
“We knew at our 20-week ultrasound that she would have heart problems, but we didn’t know anything else until after she was born,” Torri Goddard, the girl’s mother, told Healthline.
Zoey’s birth revealed that her health problems were worse than anticipated.
She had VACTERL syndrome, a series of birth defects that often occur together. Zoey’s included an esophagus that was not attached to her trachea and a small intestine that was not attached to her stomach.
Zoey spent the next eight months in the hospital. Her parents were told to expect that their daughter would need multiple surgeries and, eventually, a heart and lung transplant.
“It was very overwhelming,” Goddard said. “We had prepared ourselves for an open heart surgery at a week old, but it became not knowing if we would be home with our baby in a year or two years.”
But the referral to Nationwide Children’s Hospital proved to be just what Zoey needed.
The doctors in Zoey’s hometown of Nashville felt that a heart-lung transplant was increasingly likely for the little girl. She had already endured 13 heart surgeries, seven cardiac arrests, and five strokes, so they sent her records to the doctors at Nationwide in Columbus.
Dr. Darren Berman, co-director of Cardiac Catheterization and Interventional Therapy in The Heart Center at Nationwide Children’s, and a team of cardiologists eagerly took Zoey’s case because they thought they might have some options for the young girl.
Before Zoey could be a candidate for a heart transplant, she was tested for certain measurements in a catheterization lab.
That’s where the heart is examined under the guidance of X-ray technology. Catheterization is generally used for less-invasive heart procedures and surgeries.
While testing Zoey in April 2015, Berman noticed that Zoey’s lungs seemed to work better than previously thought. He also noticed that the shunt that was placed in Zoey’s heart in Nashville seemed to be a bit too big for her.
“I thought this shunt in her heart was both hurting and helping her,” Berman told Healthline, “so I temporarily blocked the flow through the shunt. This showed that her heart actually functioned better without the shunt.”
Because Zoey’s heart could function without the shunt, this made her a candidate for a second heart surgery and made a heart ransplant unnecessary.
Two weeks later, Zoey received the second heart surgery, a Glenn heart procedure, which essentially reroutes blood to the lungs, at Nationwide Children’s. Prepared for her recovery to take eight weeks, Zoey’s family buckled down for a long stay in Ohio.
However, the surgery worked so well that Zoey went back home to Nashville in just 10 days.
“Her anatomy just really took to that surgery,” her mother said. “It helped relieve some of the pressure in her lungs and made her heart have to work less hard. Her heart said ‘OK, I like this!’”
Zoey’s doctors liked the result, too.
Her prognosis is good, according to Berman. She has at least one more surgery to go. While a future heart transplant has not been completely ruled out, doctors are still optimistic.
“We anticipate Zoey will have a mostly normal life. Our hope is to get her into a place where she can do what all of the other things kids do, other than having occasional visits with doctors,” Berman said. “We want to be able to treat her like a normal girl.”
Because Zoey’s been doing so well, a lot has changed in her life.
She’s learning to talk and is receiving physical and occupational therapy at home. Goddard is hopeful that Zoey will be ready to attend school in a regular classroom in two years, when she’s 5 years old.
“Cognitively, she’s at a 3-year-old level,” Goddard said. “She’s learning her ABCs and numbers. She knows all her colors and she knows over 100 signs in American sign language. She loves people and she’s very bubbly. She’ll come up and give you a hug and a kiss.”
Berman says he feels honored to have met and treated Zoey. Goddard, too, emphasizes how special her daughter is.
“When you’re around her, you just know you’re in the room with a miracle,” she said.
Goddard hopes that with greater public awareness about VACTERL, more funds will be freed up for research and advocacy.
“The more we can promote amazing stories like Zoey’s, the more funding we’ll get from research,” Goddard said, “so hopefully, years from now, a child with VACTERL will not have the same issues.”