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HARRISONBURG – Thirteen-year-old Maddie Shinaberry fell in love with dancing when she was just a toddler.
The Rockingham County teen joined the Rockingham Ballet Dance Theater at age 9, and by 11, she was invited to dance with the American Ballet Theater in New York City.
At the top of her game, Maddie dreamed of dancing with the most prestigious dance troupes. What she never imagined was that her dreams would be put on hold due to a life-threatening illness.
It all started in August 2005. After making her New York City debut, Maddie became violently ill with a common gastrointestinal bug that she just couldn’t seem to shake.
Then, four months later, Maddie went on vacation with her parents, Ellen and Curtis Shinaberry, and sister, Elizabeth. During the trip, Maddie’s breathing and energy fell so low that she couldn’t keep up with the planned activities.
Something was definitely wrong with the young girl who was known for being active, not only in dance but also swimming, snowboarding and general socializing.
A Surprisingly Grim Diagnosis
When the Shinaberrys returned home, Maddie went to Rockingham Memorial Hospital to get checked out.
RMH referred Maddie to the University of Virginia Medical Center, where doctors performed a battery of tests and an echocardiogram.
From the tests, physicians diagnosed Maddie with primary pulmonary hypertension, a rare disease that causes increased blood pressure in the arteries that supply the lungs. Primary means the cause of Maddie’s illness is unknown.
The disease leads to, among other things, shortness of breath, dizziness, fatigue and fainting. And, in Maddie’s case, it caused her lungs to push against her heart as her pulmonary blood pressure soared from the norm of 25 to between 130 and 140.
To help her cope, Maddie received a central venous catheter in her chest through which she took medication that went right into the bloodstream, giving her lungs more stamina and easing the pressure in her chest. She also used an oxygen regulator at home.
“It’s such a rare disease that the medications that they use … are not widely known,” said Ellen Shinaberry, a pharmacist at RMH. “Not only was the disease new, it was a major lifestyle change.”
Maddie could no longer take regular showers, dance, swim or socialize like a normal teenager. Everything had changed.
“It wasn’t going to be life as we’d known it, but it was going to be life,” said Curtis Shinaberry, also a pharmacist. “We just kind of planned our life around having to make Maddie as good as we could.”
In an effort to maintain some normalcy, Maddie, a freshman at Turner Ashby High School, attended classes four days a week despite fatigue and shortness of breath.
But by the end of last year, Maddie’s condition worsened. She became short of breath from the slightest of activities and her heart beat so hard it could be seen outside her chest, Ellen Shinaberry said.
At that point, physicians at U.Va. referred Maddie to the Children’s Hospital of Pittsburgh and suggested she get on an organ-transplant list. The physicians in Pittsburgh agreed that a double-lung transplant was crucial.
“They told us Maddie’s prognosis was six to 12 months if she didn’t get this transplant,” said Ellen Shinaberry. “I was thinking the whole time what it must be like for her. … It’s a horrible disease. Most people don’t survive.”
A New Breath Of Life
As the days passed, a fear lingered that Maddie might not receive the transplant in time, but the Shinaberrys put their faith in God.
“I just gave it to God and said, ‘You know best … your will be done,'” Curtis Shinaberry said. “I just prayed about it and I prayed for him to cure her or heal her.”
Then, the Shinaberrys’ prayers were answered.
At about 10:30 a.m. on Jan. 13, Ellen Shinaberry received a telephone call at work. It was the Children’s Hospital of Pittsburgh, letting her know that lungs had become available for Maddie.
The catch was, of course, that the operation must be conducted soon after the organs are procured. With the drive from Harrisonburg to Pittsburgh taking more than four hours, the Shinaberrys needed a faster means of transportation.
Luckily, the folks at Dynamic Aviation, a Bridgewater-based company that provides aircraft for everything from government intelligence to fire management, agreed to fly Maddie to the hospital at a moment’s notice should lungs become available.
“I’ve done a lot of interesting things over the last number of years and met a lot of interesting people,” said Karl Stoltzfus, the chairman of Dynamic Aviation, who calls himself Maddie’s pilot. “But this is the most important thing I’ve done for a long time.”
With the pilot on alert, Ellen Shinaberry picked up Maddie, who had all her dance gear packed for the trip, and her other daughter from TA and took them to the airport. Curtis Shinaberry met them there.
Then, Ellen Shinaberry and Maddie flew to Pittsburgh, where they arrived for the transplant by 12:30 p.m. Curtis Shinaberry drove up to the city later that afternoon.
As it turned out, Maddie didn’t actually go into transplant surgery until about 8:30 p.m. The procedure took about five hours and was deemed a success.
Determined To Dance Again
After surgery, Maddie spent seven days in the cardiac intensive care unit, where doctors watched to make sure her body didn’t reject the new lungs.
They also kept a close eye on the incision that was made during the operation. It’s referred to as a “clamshell” and stretches across Maddie’s chest in a diagonal fashion.
Maddie was up and walking around with assistance just a few days after receiving her new lungs. And after seven days in intensive care, she was placed into a step-down ward, where she learned about her new medication and prepared for discharge from the hospital.
Seven days later, Maddie was released from the hospital and moved into a Pittsburgh hotel, where her mother has taken up residence since the transplant.
Every day since being discharged, Maddie has had to go to the hospital for blood work, tests or other procedures. She is currently taking 21 pills a day, including one she will be on for the rest of her life to prevent her body from rejecting the organs.
Despite all the needle pricks, the probability of a scar from her incision and the possibility that she may eventually have to have another transplant, Maddie has remained optimistic throughout her illness, Curtis Shinaberry said.
“She has been so steadfast through this whole thing … and that is so moving,” he said. “She’s always tried to look at the positive. … She’s got a lot of faith.”
Ellen Shinaberry says she hopes to bring Maddie home in a couple of weeks, in time for the girl’s 14th birthday on Feb. 28. But before Maddie returns, she says she wants to dance with the Pittsburgh Ballet Theater.
“She told me before she came up here that she was going to dance up here,” Ellen Shinaberry said. “She’s very optimistic and very determined. … She’s getting stronger every day, feeling better every day.”
Contact Jenny Jones at 574-6286 or jjones@dnronline.com
