Jessi Spring couldn’t wait for her 20-week ultrasound to find out if the baby she was carrying would be a boy or a girl.
Married for four years, it was the first child for the legal auditor and her husband, Aaron, a firefighter.
But as the doctor studied the grainy black and white image of a baby girl, he realized there was a problem.
He sent the young couple to a specialist, where further testing revealed that their baby would be born with Arthrogryposis Multiplex Congenita, or AMC, a congenital disorder that leaves the elbows, knees and other joints unable to bend.
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“My husband and I just sat there and didn’t know what to think. So we just held hands,” Jessi Spring said.
“Honestly, I was devastated. I wondered, will she ever be able to play with me, go hiking, do the fun stuff that I like to do?” she said. “Mercifully, I didn’t know at the time that 10 percent of AMC kids don’t make it to their first birthday.”
Hungry to learn all she could about the condition and how it would impact the child she was carrying, Jessi began looking for help.
That search led her to Shriners Hospital for Children in Greenville, where her daughter Sadie, now a precocious 3 1/2 year-old with long golden curls, got the surgery, physical therapy and other care she needed.
“Shriners has been a God-send,” Jessi Spring said. “She’s very healthy now and her prognosis great.”
Just a few years ago, the very existence of the hospital was in question. Today, it’s not only strong, it’s expanding.
Caring for kids
The hospital has been a part of the Greenville community for more than 80 years, treating children from North Carolina, Georgia, Tennessee, Virginia, Alabama and South Carolina who have cerebral palsy, club foot, spinal abnormalities and other orthopedic conditions regardless of ability to pay.
Along with 21 other health care facilities nationwide, it’s run by the Shriners, an international fraternal organization, with income from an endowment.
But in 2009, as the nation grappled with a sputtering economy, that endowment tumbled from $8 billion to $5 billion, leaving the organization to operate at a deficit. So the Shriners pondered a variety of cost-cutting measures, such as reducing budgets and closing six hospitals, including the one in Greenville.
But when the community learned the news, it came to the hospital’s support, hosting yard sales, concerts, car shows, karaoke contests and golf tournaments to raise money to keep it open.
And eventually, the Shriners voted to keep it running.
But the fallout from those tumultuous days took a toll. Patient volume dropped from about 14,000 a year in 2008 to 13,384 in 2009, and to a low of 12,841 in 2011. And as the volumes dropped, morale bottomed out as staffers wondered whether they would have jobs.
“People were scared,” hospital administrator Randy Romberger said. “Most of the care we give is complex and over the child’s lifetime. And if I were one of those parents, and thinking, ‘Oh, they’re going to close,’ I’d start looking around.”
At the same time, the hospital’s budget was cut from $24.2 million in 2008 to $22 million in 2010.
Spreading the word
So over the past few years, hospital officials have taken steps to improve efficiency and to tell Shriners’ story to pediatricians and orthopedists in the six-state region, an effort that has yielded almost 200 new patients a month mainly from physician referrals, Romberger said.
“Five years ago, we were on a downward slide. But over the past couple of years we’ve been able to turn that tide,” he said.
“In some ways, if you look back over it, it was probably not a bad thing that that happened. It forced people to get focused and not take for granted the fact that this organization existed for years on the benevolence of people and the Shriners.”
Another seismic change the hospital made in 2011 to address dwindling finances was to start taking health insurance for the first time. Today, he said, about 90 percent of patients have some kind of insurance — half Medicaid, the rest other commercial coverage.
Last year, that brought in about $6 million, Romberger said. And while that’s money the hospital didn’t have before, it only covers about a quarter the budget, he said.
But officials hope that reimbursements will grow as insurers become more familiar with the specialized work that Shriners does — and how it can be cost-effective.
And now, he said, Shriners is poised to expand into new territory, new technology and even stronger revenues.
By September, Shriners will put a doctor at a community health clinic in Beaufort so patients in the Lowcountry don’t have to travel to Greenville for every visit, Romberger said.
Plans also call for putting Shriners pediatric orthopedic surgeons at two other children’s hospitals in surrounding states that don’t offer those services now.
“That will mean we will be able to treat more kids,” said George Thompson, chair of the hospital’s board of governors. “And it will be less of a burden on families and kids if we have somebody in those areas.”
It will also generate some revenue for Shriners, Romberger said.
“Our goal ultimately is to not have to touch the principle of that endowment,” he said, “just use the earnings to help fund the hospitals.”
The hospital also hired a full time fundraiser, a decision that brought in $800,000 for a new EOS imaging machine that produces 3D pictures, Romberger said, adding that Shriners will be the first hospital in Southeast to have one.
The equipment produces the images using one-ninth the radiation of traditional imaging, an important consideration when caring for children, who are more sensitive to radiation, he said.
“This is hugely exciting,” said Dr. Michael Mendelow, a pediatric orthopedic surgeon at the hospital.
“We have all these kids getting X-rays from when they’re really young because you need to know what you’re dealing with,” he added. “With this, you’re getting more information but less radiation.”
And with these more detailed images, doctors hope to provide better treatment that results in better outcomes too, said Dr. Peter Stasikelis, a pediatric orthopedic surgeon and chief of staff at the hospital.
“There are a lot of exciting new programs going on,” he said. “A lot of good things are happening.”
Services include cerebral palsy and limb deficiency clinics supported by in-house prosthetics and orthotics as well as a motion analysis lab that uses high-speed photography to pinpoint joint problems and evaluate gait, he said. And a multi-disciplinary approach brings experts in several fields together to find the best treatments.
With the proper interventions, children are able to function better, which impacts their quality of life, he said.
“That’s what orthopedics is all about,” Stasikelis said. “Making people the best they can be.”
Ahead of the curve
Shriners also has a large scoliosis service that cares for infants, who fare poorly without intervention, he said. It also cares for teenagers, like Devon Beesley.
Now a 15-year-old honor student at Eastside High, Devon developed an unusual S-shaped curve in his spine two years ago, his mother, Kirsten Beesley, said.
“It happened at adolescence. I had never noticed it before,” she said. “We had taken him for sports physicals and nothing was ever mentioned.”
Worried, Kirsten and her husband, Joe, an industrial refrigeration salesman, took their only child to a free orthopedic screening clinic at Shriners, where his deteriorating scoliosis was diagnosed.
“His ribs and hip almost touched on one side,” said Kirsten Beesley. “Everything was pushed up against each other and his lung capacity was limited. If we hadn’t done something about it, he would continue to get worse.”
“Eventually, the spine could compress into the lungs,” Joe Beesley said. “It was life-threatening.”
A year ago, Devon underwent spinal fusion surgery, in which two rods about 16 inches long were attached to his spine with about 20 screws, they said.
Today, he’s learning to be a camp counselor and getting ready for his sophomore year at Eastside with plans to study engineering in college.
“He is fine,” his mother said. “As soon as we met Dr. Pete (Stasikelis) and came into the facility, we knew it was the place for Devon.”
Lots of help
Thanks to the endowment, Shriners can offer services that aren’t profitable, Romberger said. That includes the motion analysis lab, which isn’t reimbursed at all, and Risser casting, which can cure many children with scoliosis, but must be done over time and in surgery, yet is only reimbursed as a cast at $40 to $70, he said.
“It can be pretty expensive,” he said. “We’re the only ones who do it because we don’t have to rely on that revenue to cover all that cost.”
Spring said the family insurance only covers about 10 percent of the cost of caring for Sadie, who was born by C-section to avoid her bones breaking during a natural delivery.
“If I had to go out and pay someone to make these braces, it would cost $1,000,” she said, pointing to the ankle-foot orthotics that help Sadie walk and run. “And she has to have two or three pairs a year. She’s a growing child. Shriners pays for that.”
There have also been trips to the Philadelphia hospital and its AMC specialists, years worth of daily physical and occupational therapy which began at birth, surgeries on her elbows, splints and serial casting for her club feet.
“When Sadie was born, she couldn’t open her fingers. Her little thumbs were inside of her palms and didn’t move out,” said Spring, who gave up her job to care for her baby.
“When children are born and don’t receive therapy right way, the contractures can stay. Imagine arms that don’t bend and stay that way. It’s hard to clean yourself and feed yourself,” she added. “I don’t want to think about what might have happened if we didn’t do the therapy.”
But today, Sadie can feed herself. She grabs for toys and runs with other children. The family celebrates the little things.
“The first time she fed herself, that was a big thing,” Spring said. “Anything. When she scratches her arm, we’re like, ‘Look!’ “
Sadie will need some kind of therapy for life, or she’ll regress. And Shriners will pay for that until she’s 21, she said.
A new day
The hospital’s current $23.2 million budget is about $1 million less than it was five years ago, Romberger said.
But still, it’s a new day for Shriners Hospital, he said.
In the past five years, it’s seen 9,427 new patients and logged 64,981 outpatient clinic visits, officials said. And it’s caring for 2,926 active patients in Greenville, Anderson, Spartanburg, Oconee, Pickens, Cherokee and Greenwood counties alone.
“Our numbers are growing every year,” said Thompson. “I think we’re looking good and we have a bright future.”
Romberger said the hospital is now on track to a sustainable future.
“Over half the money given to us (is from) people who believe in what we do,” he said. “We’re going to get out and do some regional things and the new technology should do a lot to set us apart, along with cutting-edge surgeries. We’re healthy now. And we’re proud of what we’re doing.”
And just last month for the first time, a Greenville patient was named National Patient Ambassador for Shriners Hospitals for Children when 10-year-old Olivia Stamps, who has diplegic infantile cerebral palsy, was chosen.
When she came to Shriners in 2010, the little girl could only walk on her toes, was unable to balance and could only stand in one place if bent over. But after surgery, today she walks normally, rides a bike, swims and does everything other kids do.
The Springs just got back from a three-day conference in Nevada, where they learned more about AMC. And on the last day, Sadie danced on stage with a ribbon for the talent show.
“Being pregnant and knowing she had special needs was the worst thing I’ve ever gone through,” Jessi Spring said. “But she’s doing so well. From a newborn who can’t even bend her arms to dancing on stage. We’re very happy.”