My Patient Experience at the Shriner’s Hospital
As my parents’ third baby, they knew something was not quite right when I was breach. A C-section was planned and the doctors quickly discovered I was born with broken legs. Being born in the 1980s, there was no internet readily available for my parents to research symptoms, but the diagnosis of Osteogensis Imperfecta was quickly determined by the medical staff.
Osteogenesis Imperfecta (OI) is a genetic disorder resulting in fragile bones that are easily prone to fracture. I was diagnosed with Type 3 OI and living in rural North Dakota, there was not medical care readily available in our area to properly treat children with OI. My young life was forever changed, however when I was referred to the Shriner’s Hospital and my experience there as a patient helped shape me into the adult that I am today.
Learn about what the Shriner’s Hospital and the work they do below. I also share my story as a patient at the Shriner’s Hospital, life after leaving the Shriner’s and lay out my recommendations for future patients.
The Shriners Hospital provides medical care for children with a variety of issues.
Major medical issues treated at the Shriners
Spinal Cord Injuries
They’ve been providing care since 1922 and have 22 locations. The Shriner’s Hospital is different from most other medical facilities because they not only specialize in pediatric care and rare conditions and disorders, but they provide care to families and patients at no cost.
So how can they provide specialty care regardless of a patient’s and their families’ ability to pay? The Shriner’s Hospitals rely heavily on donations and charitable giving. The hospitals were founded by the Shrine Masons which are primarily responsible for fundraising and managing endowments that help fund medical costs.
Some characteristics that make the Shriner’s Hospitals unique from other children’s hospitals:
They focus on fostering a child’s self-esteem and positive self-image as much as providing physical medical care.
They offer support for not just the patient, but the entire family and siblings of the child receiving care.
The Shriner’s also focuses much time, staff, and resources to research to help develop ground breaking new treatments.
They provide customized care to all children and will not turn those away who need medical attention.
Their staff has specialty experience working with children which means there is never a shortage of child life specialists, doctors with funny ties, nurses with big smiles, bright colors and décor that appeal to children throughout their facilities, and frequent events and visitors for their patients.
My Journey as a Patient at the Shriner’s Hospital
As earlier stated, growing up in a rural area there were not a lot of medical facilities, let alone medical staff that had experience treating children with OI.
At the age of 2, my parents were referred by our local hospital to the Shriner’s Hospital in Minneapolis, Minnesota which had a team of medical professionals experienced in treating children with OI and other orthopedic conditions.
Throughout my childhood, I visited the Shriner’s at least once per year. Packing our family of 6 for what was sometimes an overnight stay and sometimes a few weeks stay during surgeries was no easy feat for my parents; but every time we had an appointment, the staff greeted us with open arms and a friendly smile. In fact, many of the nurses and doctors remembered me each time I went back from the time I was 2 until I left at age 18.
During my time, I experienced most every treatment the Shriner’s had to offer a child with an orthopedic condition, from helping me find my first (of many) wheelchairs to working with physical therapists to strengthen my body, to consulting with nutritionists and surgeons who performed a variety of surgeries.
Below are just some of the procedures I had during my time as a patient at the Shriner’s:
Rodding surgery in which metal rods were placed into my femurs to stabilize and strengthen the bone.
Spinal fusion and rodding to combat scoliosis (a common symptom of OI).
Custom leg braces to strengthen my leg muscles and try to combat bowing of the long bones.
Custom fit for manual and electric wheelchairs, walkers, and forearm crutches.
Yearly check ups and progress reports to monitor overall health and wellness.
Transition planning as I neared the maximum age of 18.
Shriner's Hospital Patient Success Story
Despite memories of pain and the physical work it took to get through multiple procedures during my time at the Shriner’s the staff always had our wellbeing at heart. The nurses and doctors there were as familiar as my aunts, uncles, and teachers back home. Whether it was the nurse who taught me how to “breathe in healing to my body and breath out the pain” as she helped me recover from surgery or the doctors who never failed to make jokes during our consultations, I cannot say enough good things about the Shriners.
I cannot say enough good things about the Shriners. I largely credit the care I received at the Shriner’s Hospital with helping shape me into the adult I am today. It was not just the medical care that allows me to be able to walk and have strength in my limbs and back which gives me the opportunity to work and manage my household, but also the emotional support I received from the staff during my time that which was a significant part of my maturity process into a young adult.
Being a patient there also provides children a unique opportunity to meet other children just like them experiencing the same conditions or treatments. Without the Shriners, many of these children would probably never have the opportunity to meet other kids and families going through the same experiences and build lifelong friends. Many kids who grew up with me at the Shriners are still my friends today.
Life after the Shriners
Transitioning out of the Shriners can be a challenge for many patients.
After experiencing specialty, top notch care for so many years as a child and adolescent, transitioning out of the Shriners system after kids turn 18 can leave a lot of unknown questions for themselves and their parents.
Where will I go after this?
How will I find a medical facility that specializes in my disorder or condition?
Will I find the same level of care after I leave?
How will I afford my own medical care going forward?
Thankfully, many Shriner’s Hospitals offer transition planning for patients as they approach their 18th birthday and graduate from high school. They offer much information about where to find medical care in the area, independent living organizations, resources for college planning, etc. If your child is in high school there is no time like the present to start planning.
When I was 18, I attended the free session that the Shriners offered before my last appointment with them as a patient. While the Minneapolis metro area offers a wide variety of medical care for people with orthopedic conditions, I had a more challenging time as I transitioned out of the Shriner’s system in finding a medical facility that had experience with someone with OI.
What is your favorite part about the Shriner's Hospital?
Some tips for transitioning out of the Shriners:
Look for a good family medicine practitioner in your area. Even if they do not have experience directly with your condition, they probably have connections to someone who does and can take care of your basic medical and prescription needs in your area.
Don’t be afraid to call your Shriners and get a referral from your doctor to another facility that treats adult patients.
If your new medical facility requires traveling to and from, check with your local county health agency to see if you qualify for travel assistance.
Stay in touch with fellow patients and staff. Thanks to the internet and social networking this is easier than ever today and you’ll never know when those contacts will come in handy when you need it later down the road.
Recommendations for Future Patients
If you are thinking about becoming a patient at a Shriners Hospital or are nervous about your first visit, please know that you are walking into a facility that has children’s health, well being, and future at the core of everything they do.
You will be in good hands. Below are some tips to make the most out of your Shriners Hospital experience:
Ask open and honest questions of your doctors and staff.
Be honest with your providers there. They will recommend many different approaches to make sure your child receives the best care available.
Ask the staff to connect you to other parents of children with similar conditions that your family is experiencing. The social support can turn into lifelong friendships and provide a priceless opportunity to learn from other patients’ and families’ experiences.
Have you been a patient at a Shriner’s Hospital? Share your experiences in the comments!
Are you thinking of visiting a Shriner’s Hospital? What attracted you to their medical care or what are you hoping to get out of your visit/experience with them? Leave a comment, below!