Cure Advocate and long-time wheelchair-user, Kristina Rhoades, shares her experience of being a Shriners Hospital patient in her youth, along with ways that you can receive care for your child too via shriners hospitals.
Kristina Rhoades has been rolling for most of her life. After surviving a spinal cord injury in 1984, when she was just 10 months old, she spent her fair share of time as a kid in hospitals and in front of doctors for one SCI-related condition or another.
Because she was a part of a military family, Kristina moved a lot prior to middle school, so her doctors seemed to be ever-changing. Some were familiar with SCI, but many weren’t. The level of knowledge and care always varied.Due to a lack of trunk support with Kristina’s SCI, she developed a pretty severe scoliosis by the time she was a pre-teen.
She shares, “I had worn what we called a ‘body jacket’ for years. It was a prosthetic that wrapped around my waist in an attempt to keep my spine straighter when it was on. As you can imagine, it wasn’t the most comfortable thing and as my body began changing, I became more self-conscious about this thing sticking out under my shirt.”
When she was 12-years-old, an orthopedic doctor raised some serious concerns about the severity of Kristina’s scoliosis and recommended that her family take her to a Shriners Hospital for a spinal fusion procedure.
“Initially, we were concerned about the cost of such an intensive surgery, but the doctor explained that Shriners was completely free for patients,” Kristina remembers. “It sounded too good to be true.
“When we learned that my diagnosis made me eligible to receive care at Shriners, and that it had nothing to do with income or other qualifications, my parents were amazed.”
Shriners Hospitals for Children are committed to providing the best care for children in their specialty areas of Orthopaedics, Burn Care, Spinal Cord Injury, and Cleft Lip and Palate, regardless of a family’s ability to pay.
VIDEO: SEE HOW SHRINERS HOSPITALS HELP CHILDREN WITH ADVANCED MEDICAL NEEDS
Kristina Rhodes Shares How She Became a Shriners’ Kid
Kristina and her family lived in the rural northeastern corner of California, so the closest Shriners Hospital at the time was in San Francisco (about an 8-hour drive away).
She and her mom attended her first appointment at a facility that was built by the Shriners to serve children with disabilities in 1922. Right away, it was obvious that the medical staff offered what Kristina’s family had found to be a rare understanding of her condition.
The vision of Shriners Hospitals is to become the best at transforming children’s lives by providing exceptional healthcare through innovative research, in a patient and family-centered environment.
After Kristina’s initial appointment and intake, the doctors agreed that a full spinal fusion was in order. They scheduled the surgery, and shared that it would be taking place at their brand new, state-of-the-art facility in Sacramento. “I was one of the first patients seen there and it was just beautiful,” Kristina recalls. “It was a magnificent building with lots of light, outdoor spaces and bright-colored walls and murals. It felt like some sort of cool resort for kids like me.”
Kristina checked into the hospital for her surgery just a few days after graduating from 8th grade. The plan was to have the surgery, do some therapy and head home in a couple weeks with a temporary brace.
Two weeks after the procedure, though, Kristina developed a staph infection and was rushed back to emergency surgery to remove all the hardware and start over.
“It was a scary experience, but the care couldn’t have been better. The surgeons, doctors (even residents!), and nursing staff were incredibly knowledgable and progressive with their model of care,” Kristina explains.
Kids Get So Much More Than Great Medical Care at Shriners Hospitals
Because of the second surgery and infection, Kristina ended up staying in the hospital for 2 and a half months. To most people, that sounds like a horrible experience, but to Kristina, it was one of the most memorable and meaningful summers of her life. And it was culture and dedication of the Shriners staff that made the experience a positive one.
“I was 13-years-old and from a very small town, in which I was the only wheelchair-user in the entire school system. I was a happy kid with friends back home, but as I formed relationships with other teens in wheelchairs during my stay at Shriners, it was incredibly profound for me.”
“It was easy and comfortable and really transformational to be around people that understood my life in ways others couldn’t.”
The staff at Shriners did a great job to facilitate and support relationships between patients, too, even those that weren’t as mobile. Kids that were on bedrest for pressure sores would be wheeled out into the common area in their beds to be able to socialize. Patients were encouraged to decorate their rooms, spend time outdoors and get up and dressed each day. Kristina recalls that patient schedules were kept pretty busy with different types of therapy, including traditional PT and OT, but also all sorts of adaptive sports and time in the beautiful swimming pool.
Kristina remembers fondly, “There were pizza parties, special guest visitors, late-night movies, fun outings, cooking classes, photo shoots, art groups and so much more. We laughed A LOT and would motivate each other when one was feeling down or in pain. In there, we were totally ‘normal.’ I even learned Spanish that summer from some fellow patients from Mexico who became like brothers to me!”
“The therapists were some of the best people I’ve ever known and helped us all become stronger, physically and mentally.”
“Certain nurses would let us stay up best ‘bed time’ and play our music too loud. You could feel that the professionals that worked there really loved their jobs, which definitely overflows to the patient.”
What’s more is that Shriners Hospitals are incredibly family-friendly. At the Sacramento facilitiy, parents were offered a free apartment upstairs, where they could escape to have their own space while their kids healed and maintained their busy schedules. Visitors were always welcome and encouraged to participate in the care of their loved ones.
“Twenty years later, I realize just how much that summer and all my subsequent stays at the Shriners hospital impacted the person I am today,” Kristina says.
“They taught me skills, from maintaining a healthy body and managing my personal care, to life hacks that helped me become more independent with tasks like cooking and cleaning.”
Kristina continues, “I truly believe my experience at Shriners awakened my desire to help other people on their wellness journeys. For me, they established a pretty high expectation for how awesome a hospital rehab can be.”
How You Can Receive Free Care for your child from Shriners Hospitals
Shriners Hospitals are committed to providing the best care for children in their specialty areas of Orthopaedics, Burn Care, Spinal Cord Injury, and Cleft Lip and Palate, regardless of a family’s ability to pay.
They were the first health care system in the country to develop spinal cord injury rehabilitation centers designed specifically for children. Their groundbreaking research has led to innovative treatment techniques, providing care that helps children lead a full, active and healthy life.Learn more about their care programs and how your family can participate at: https://www.shrinershospitalsforchildren.org/shc/care
Cure Medical has a tremendous level of respect for Shriners Hospitals and the thousands of children they continue to help each year. To locate a Shriners hospital near you, click here. To support the mission and vision of Shriners Hospitals by donating, click here.
Additional Free Resources for Kids Who Cath
The sterile, single use, Pediatric Hydrophilic Cure Catheter® is not made with any scary chemicals like DEHP, BPA or Natural Rubber Latex.
Designed especially for kids and their concerned parents, this easy-to-use, water-lubricated catheter is not made with any scary chemicals like DEHP, BPA or natural rubber latex.
The new Pediatric Hydrophilic Cure Catheter® is affordable and offers all the convenience of a ready-to-use catheter, without the stains or mess.
To request free samples of the Pediatric Hydrophilic Cure Catheter® or any Cure Medical catheter, contact your local distributor of quality healthcare products, or click here.
FREE EDUCATIONAL MATERIALS FOR GIRLS & BOYS
In addition to the new Pediatric Hydrophilic Cure Catheter®, Cure Medical is offering a free EDUCATION PROGRAM developed by nurses that parents can use to teach their children ‘How To Cath’ using fun, instruction tools like:
- Backpacks in blue and pink with no logos — for discretion at school or away from home,
- Flash cards for boys and girls that also include steps for cathing with or without stomas
- Coloring books with crayons, a complimentary toy – and more!
Contact us to request your free backpack with educational materials to help your child learn the steps for self-cathing.
You can request a sample of the Pediatric Hydrophilic Cure Catheter®. When you do, an option will appear allowing you to add an educational backpack to your order.
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