When Kendra and Eric walked into Shriners Children’s Salt Lake City with their 4-week-old infant, Hadley, they were terrified.
Having taken their daughter to the emergency room and discovering she had four fractures at different stages of healing, they found the shocking answer to the cause of her recent fussiness. Their pediatrician thought Hadley may have osteogenesis imperfecta (OI), commonly called brittle bone disease, and referred them to specialized care at Shriners Children’s.
The young parents were worried, scared and unsure of what the future would hold for Hadley. “We were grasping for answers and information on how we would care for our sweet Hadley,” said Kendra. “Would she live a happy, fulfilled and rich life?”
Luckily, Shriners Children’s Salt Lake City just happened to have its monthly OI clinic with many specialists on hand that week. The OI specialty clinic brings together orthopedic surgeons from Shriners Children’s and consulting physicians from other specialties to provide comprehensive care. After many specialists examined Hadley, and following a blood test, it was confirmed she had OI.
“That’s the value of these specialty clinics,” said Kristen Carroll, M.D. “As physicians, we’re working with other physicians and seeing that child’s condition through a different lens than our own. I learn something about medicine, and the care of our wonderful patients, every single time.”
Specialists like Lisa Samson-Fang, M.D., pediatrician and neurosurgeon, Lynn Kerr, M.D. offer a different perspective, broadening the scope of care a family can receive in just one visit. Dr. Carroll knows bringing all these specialists together makes for better overall care for her patients. “I’ve been taught from other practitioners during a multispecialty clinic and hear what they have to say to patients. I think that’s awesome because the next child gets even better care because of that.”
After their first visit to the OI clinic, Hadley's family instantly felt better. “The kind and caring staff at Shriners Children’s eased our worries by helping us to understand Hadley’s new diagnosis of her rare genetic disorder, osteogenesis imperfecta,” said Kendra. “On that day, eight years ago, they helped turn despair into hope!”
Kendra and Eric learned that the diagnosis meant Hadley would have to be careful for the rest of her life, because her bone density would always be a concern, and bone breaks would become a reality. With the experienced specialists and treatment options at Shriners Children's Salt Lake City, they were confident they were in good hands.
Hadley has endured 109 fractures and 22 surgeries. Shriners Children's has enabled Hadley to do things we were told she would never do!
As Hadley grew and continued to break bones, her parents saw that her spirit was never broken.
When it was discovered she wouldn’t be able to pursue the violin like her brother and sister, Hadley found another way to express her love of music. One day Hadley hopped up on the chair of a small set of drums belonging to her brother and it was love at first beat. Today, Hadley has a full-size set of drums she loves to play. Hadley continues to pursue her musical aspirations by taking drum lessons. Her dream is to someday be able to play in a live band.
A Big Goal for a Simple Step
An important step on Hadley’s journey is strengthening her bones. Infusion therapy with zoledronic acid has made a big difference in her progress. The medicine strengthens her bones and allows her to do more. What seems simple for most people to do every day, such as putting one foot in front of the other unassisted, is an activity Hadley rarely experiences. Hadley's goal is to walk without her walker or crutches. By going to physical therapy and receiving infusion therapy, she hopes to achieve this soon.
Dr. Carroll, who has been Hadley’s orthopedic surgeon since the beginning of her journey, says this goal is absolutely possible. Dr. Carroll loves that Hadley has the confidence to set big goals and work toward them. She knows with support of the team at Shriners Children’s and her family, she’ll do amazing things.
“Hadley has an incredible family that supports her and I hope she feels that from us, too," said Dr. Carroll. "I hope she understands that we are always here for her. She is truly a remarkable child...even though I do have to ask her, 'please sweetie, do not jump off the couch again! Promise me!'”
An Extended Part of the Family
Getting to know Hadley and her family is part of the reason Dr. Carroll loves her job. “This is why pediatric orthopedics is so rewarding,” she said. “Because of these really long-term and close relationships you have with the patient and their family. You almost become another parent to the child. It’s wonderful to be in this relationship of caregiving and nurturing with the family, to figure out what is possible together.”
Kendra says that Hadley’s life has been touched by many incredible people, but the one who has left the longest lasting impression is Dr. Carroll. “She’s helped Hadley do things she never thought possible,” said Kendra. “Hadley has a dream to one day serve others in the same way. She wants to follow her footsteps and become a doctor like Dr. Carroll."
Kendra noted that Hadley has set the tone for their family. "Watching Hadley’s tenacity in facing osteogenesis imperfecta,” she said, “we have learned from Hadley, that anything is possible!”