Shriners Hospitals for Children saved my life!

Rachel’s first alarm about Nathan was at her four-week ultrasound appointment. The ultrasound uncovered that his femur bones were developmentally behind and had a slight curvature. Nathan’s official diagnosis didn’t come until he was 6 months old. He was diagnosed with the rare bone disease, osteogenesis imperfecta (OI,) commonly called brittle bone disease. OI is a genetic defect which impairs the body’s ability to make strong bones.

Nathan was delivered by cesarean due to his delicate condition. Following the delivery, Rachel was informed that a nearby hospital, Shriners Hospitals for Children — Salt Lake City, specialized in rare conditions of the bones. “This was the first time we had ever heard of Shriners Hospital. We did not expect Nathan to survive birth, so to hear that not only was he living, there was a place that offered specialized care, was wonderful.”

When asked what Shriners Hospitals for Children has meant to him, Nathan said, “Shriners saved my life!”

He was referring to a pivotal moment early in his life. When Nathan was born, his little body did not move much. After his parents did some research, they decided to try the Pamidronate treatment, a two-day bone strengthening infusion that he would receive every so often. After the first treatment, his parents noticed a night-and-day change in their newborn. He was now punching and kicking. He suddenly seemed happy. “It was like a light was switched on,” said Rachel. “We realized that Nathan's condition comes with chronic pain. His new treatment took some of that pain away and he felt he could move!” Over the years this treatment has allowed him to progress. That, along with his numerous surgeries and procedures, have not only allowed him to live, but have given him a higher quality of life. Nathan's parents feel he would not be where he is today without Shriners Hospitals for Children, and quite possibly might not even be here.

The first scary fracture

When Nathan was just 2 years old, his femur fractured, possibly from a muscle spasm. He was taken to a local emergency room for care. After a long wait, it was determined they could not splint his leg due to his brittle bone disease. After a scary night in the hospital, Marcella Woiczik, M.D., who does trauma calls at the hospital where Nathan was admitted, was able to properly splint the broken bone. Nathan’s family learned through this experience that Shriners Hospitals for Children is the only place with staff who know how to care for Nathan’s unique condition.

“Now, if there is an emergency,” said Rachel, “we call Shriners Hospital and ask them to call the emergency room and brief them on Nathan. This has worked so well. We are so grateful to a hospital who would take a moment to make the situation better for Nathan at a totally different facility!”  

Hospital staff who know my name

Now, 12 years later, Shriners Hospitals for Children has become a very important part of Nathan’s life. So much so, he refers to it as "my Shriners." A big reason for this relationship is the staff. He feels like he is important to everyone. Everywhere he goes at the Salt Lake City Shriners Hospital, whether he is seeing his orthopaedic specialist, Dr. Woiczik, the wheelchair department or physical therapy staff, or going to clinic or the inpatient unit, the staff call him by name. “They really care about his well-being,” said Rachel. “He is not nervous or afraid of anyone at the hospital. He may not like the procedures, but he enjoys talking with everyone and the friends he has made.”

Dr. Woiczik has been with Nathan through some rough times. Nathan has had hundreds of broken bones, more than his family can keep track of in 12 years. Through it all, Rachel’s appreciation of the staff who are consistently there for him has continued to grow. Dr. Woiczik thoughtfully listens to Nathan’s ideas. Nathan thinks of her as his friend and doctor. “I enjoy how Dr. Woiczik teases and laughs with me,” he said.

Nathan moves independently thanks to his motorized wheelchair customized by the wheelchair department team at Shriners Hospital. Nathan also attributes his mobility at home, when he’s not in a wheelchair, to the work he has done with his physical therapist, Sonya.

More than orthopaedics

Four times a year, Shriners Hospitals for Children — Salt Lake City holds a specialty osteogenesis imperfecta clinic, just for children with brittle bone disease. Specialists from many fields are available at the clinic as resources for families with children with OI. Some of the services offered include dental screening, orthopaedic care, spine care, care management, nutrition service, genetics consultation and developmental pediatric consultation. Access to therapy services (physical, occupational and speech) and wheelchair services are also available as needed. Nathan has found the OI clinic to be incredibly valuable. Rachel appreciates the convenience of having access to so many specialists on one day and in one location. “If it were not for the OI clinic,” said Rachel, “we would be spending three or four days a week driving back and forth to the hospital to see all the specialists, and they have other families there who you can connect with who are on a similar journey. We really enjoy visiting on OI clinic days!”

Rachel has advice for families new to the brittle bone disease journey. “Take your time. Take time to adjust to a new normal. Take time to consider treatment options. Take time to get to know your child and their cues. This is a life-long journey, and while it is hard, there is so much goodness gained. OI kids are the happiest, spunkiest, loving kids.”

“You will not find a better group of people to care for your child than at Shriners Hospitals for Children,” continued Rachel. “They have made a hospital feel cozy and welcoming. This all promotes healing and smiles. You could not ask for more caring doctors, therapists, nurses…all staff for that matter. They are living angels sent to care for our babies.”