By Jenny Cowan
When Gibbstown resident Stephanie Byrwa tells people that she works for Shriners Hospital for Children in Philadelphia, most people assume she must be a doctor or a nurse. After all, the word hospital typically conjures up images of white coats, scrubs and a degree in medicine.
And while these medical professionals certainly deserve our praise, they are not the only ones performing duties vital to the success of our hospitals.
Dressed not in scrubs, but in a smart business suit and coffee in hand, Byrwa knows that sometimes the most important jobs are the ones behind the scenes. Byrwa, a 2003 graduate of Kingsway Regional High School, studied public relations at Rowan University and has worked for the past seven years as the Public Relations Manager for Shriners Philadelphia. It’s a job that, ironically, doesn’t get much press, yet is critical in helping Shriners fulfill its mission.
Since 1962, Shriners Philadelphia has served children with orthopedic conditions and spinal cord injuries. As part of the largest pediatric hospital chain in the country, Shriners Philadelphia serves over 16,000 pediatric patients every year. Admission to the hospital is based on medical need, and all services are provided regardless of a family’s ability to pay.
Yet Byrwa explains that she encounters many people who have never heard of Shriners or the unique care they provide, and she has made it her mission to change this.
“As a specialized hospital focusing on orthopedics and spinal cord injuries, it is vital for people to know what we do. Often people will say ‘oh yeah Shriners Hospital. They do great work,’ but not totally understand the great work we do. We want to help more kids, and allow more options for care and treatment. We are constantly looking for new and innovative ways to provide better care options.”
Much of Byrwa’s work focuses on keeping in close contact with the doctors at the hospital and communicating with the media through press releases about new technologies and procedures that the hospital is able to provide.
Byrwa doesn’t mind her role working behind the scenes. She said that for her, the reward is getting to know the patients and families, and making a difference in their lives. She adds that one of the best parts of the job is that it challenges her to be involved with many different parts of the hospital, whether planning events for families or sitting in on a surgery.
Recently, though, Byrwa faced a challenge that she wasn’t sure she was up to.
In April, the FDA approved a new technology that promised to radically change the treatment options available to children living with scoliosis.
Scoliosis is a condition in which the normally straight spine forms a sideways curvature. Depending on the severity of the condition, the curvature of the spine can be disabling, leaving little room for the lungs to expand and work properly.
Traditionally, treatment for scoliosis has involved either bracing, or, for more severe cases, the surgical implantation of growing rods. However, after the initial surgical implantation of growing rods, a smaller procedure every six months after is required to manually lengthen the rods as the child grew. Each time the rods are lengthened the child has to face the risks of surgery and anesthesia.
For parents James Swint and Shakema George, whose four year old daughter Tianni was diagnosed as an infant with scoliosis, the prospect of multiple surgeries was frightening. Hoping to find the right treatment for their daughter, they turned to Shriners.
Months of research led Tianni’s parents to consult with Dr. Patrick Cahill, an orthopedic surgeon at Shriners Philadelphia. In the course of just a year, Tianni’s spinal curvature had grown from 50 to 100 degrees, bending her sideways and in danger of crushing her lungs. At the time, surgery to implant rods was the only option.
As fate would have it, two months before Tianni’s surgery, a brand new, cutting-edge treatment became available to their daughter. The new treatment, called MAGEC (MAGnetic Expansion Control) Spinal Bracing and Distraction System, proved to be what Dr. Cahill called, “a game changer.”
MAGEC rods are adjustable titanium rods that can be gradually lengthened from outside of the skin as a child grows. The titanium rods contain internal gears, which can be controlled with a special magnetic device to gradually lengthen the rod. The lengthening procedure is done in a regular exam room, and does not require the use of additional surgeries or anesthesia.
A Shriners’ press release about the new rods explains, “The MAGEC rods are an alternative to the emotionally and physically painful treatment regimen of the traditional growing rods.”
In April 2014, Tianni became the first patient in the U.S. to undergo the cutting-edge procedure since the FDA approved it. Dr. Cahill performed the surgery at Shriners Philadelphia with outstanding results.
Tianni had the rod expanded for the first time in July, and she is scheduled to receive additional lengthening treatments every three months.
However, while the new treatment was a success, few media outlets were interested in the story. From the beginning, Byrwa had worked closely with the physician and the family, knowing that these new rods could help change the lives of thousands of children.
Despite a number of press releases, it seemed no one wanted to cover the new technology. Byrwa says, “We sent the pitch out to the local media, but [it seemed like] the timing wasn’t right. It was back to the drawing board. ”
Byrwa knew that without media coverage, few other patients and families of children suffering with scoliosis would realize that they had additional, less invasive, treatment options.
After exhausting her own contacts, she turned to the help of the Shriners national public relations agency. Passionate about the difference that MAGEC rods could make in the lives of other children, Byrwa wasn’t willing to give up easily.
Then, as Byrwa said, the stars aligned. Her colleague at the national public relations agency had a contact at The Doctors TV show. The Doctors, an Emmy Award-winning daytime talk show, airs on CBS and features a number of “celebrity” doctors and discusses various health and wellness topics.
Byrwa knew that coverage from a national television show viewed daily by close to two million people would be her biggest break yet. She spent weeks perfecting her pitch, going over every word, every angle of the story.
It took three weeks, but Byrwa finally got the news that The Doctors was interested in filming Tianni’s story.
So on Sept. 8, Byrwa flew to the set of The Doctors in Los Angeles, California. She spent the next several days preparing Dr. Cahill and the Swint family, giving mock interviews and providing support, so that they would be ready for their turn in the spotlight.
When the time came for filming, Byrwa confesses, “I was just as nervous as they were getting ready to go on camera behind the stage. It was very surreal. I worked so hard to have this happen, and we were here.”
The episode aired on Friday, Oct. 3. The short segment focused on the incredible difference that MAGEC rods made in the life of little Tianni. Her mom, Shakema, said that Tianni is already walking straighter and breathing easier, giving hope to a family that only a few months ago feared the many surgeries that lay ahead for their little girl.
Byrwa’s name isn’t mentioned anywhere in the press releases about MAGEC rods and she isn’t shown on the episode of The Doctors. Yet without her tenacity, the media may never have covered the story at all.
What’s remarkable about Byrwa is that when asked what the most rewarding part of the entire experience was, she doesn’t mention anything about her own professional accomplishment. Instead she says that her reward was helping a physician and family get their story out to the public, so that their experience can change the lives of others.
She said she also learned a valuable lesson about being persistent, and asking for help when the stakes are high. She’s glad that, in this case, a story about good news got some national attention, and that she got to play a role in it.
It’s a good reminder that despite the crisis of rising medical costs, our hospitals are still forging ahead, doing important research and improving the lives of the sick. It’s also a reminder that it takes an entire team of people to make that happen, many of whom don’t have an M.D. behind their name, but are just as passionate as any doctor about helping people in need and wanting to make a difference.