Miranda Day was born with a rare type of congenital scoliosis and a tethered spinal cord, a condition where the spine is split into two and entwined towards the tailbone. After her first surgery in her family’s home state of California, it became clear to doctors that it wouldn’t be her last. “Scoliosis isn’t life-threatening, but it can be a detriment to your well-being,” says Day. “My parents’ goal was to give me the best quality of life and not have any setbacks physically or otherwise.”
Miranda’s parents, Rachel and Allan, were determined to find a hospital better equipped to handle their daughter’s inevitable next surgeries. After many hours of independent research and consultations with doctors in California, Rachel and Allan narrowed their options down to two pediatric hospitals with cutting-edge orthopedic centers. Because Allan’s family was already located in Massachusetts, Boston Children’s Hospital emerged as the obvious choice.
Rachel and Allan moved their family across the country to benefit from Boston Children’s, but little did they know; Boston Children’s would end up benefiting as well.
Miranda the patient
During Miranda’s first surgery at Boston Children’s, orthopedic surgeon Dr. John Emans implanted Harrington rods along her spinal column to help straighten it. “In 1984, it was a novel concept to bring a comfort item into an operating room, but Dr. Emans let me bring along my beloved stuffed animal honey-bear, and as a 5-year-old, that was really special,” remembers Miranda.
After her surgery, Miranda struggled to stay positive while spending her summer recovering in the hospital. “I was very moody and angry I wasn’t able to play outside with my peers,” she says. Once her recovery was complete, Miranda started first grade, played basketball, rode bikes and stayed active.
“Health issues shouldn’t define you, but can impact you. This struggle is just part of your story.” ~ Miranda
Over time, however, her muscles grew around the Harrington rods, causing her a lot of pain. Emans decided to remove the rods when Miranda was 10 years old. “At the time, I was just starting to get into biology and had a science fair coming up,” Day says. With this in mind, Emans released some of her x-rays and even managed to salvage some of the rods to show her class. “It made it fun to have such a personalized project,” she says.
Miranda wasn’t the only one who benefited from Emans’ personal touch. While her father worked long hours, Miranda’s mother, Rachel, would drive her daughter an hour and a half to appointments at Boston Children’s. The commute proved difficult when Miranda spent multiple nights in the hospital. “We didn’t have a ton of money, so having a hotel in Boston wasn’t an option,” Miranda says. Emans helped the family secure a spot for Rachel at an on-call nursing dorm right across the street from the hospital. Emans also shared his personal desk phone with the family. “Knowing my mom was alone, he would always check in on her after a day of surgery to make sure she was OK,” remembers Miranda.
Despite Emans’ unwavering support, at that time, there weren’t many official resources to help patients and their families maintain a normal life while in the hospital.
Miranda the professional
For the past 15 years, Miranda has done her best to help make that sense of normalcy a priority for patients and family’s at Boston Children’s. Now, as the director of family and volunteer services in the Hale Family Center for Families, Day has expanded and developed innumerable programs and resources to help patients and families maintain ties to their lives while in the hospital.
“Whether my disease consciously or subconsciously drove me to my career path, I always had a will to be my very best and then some and that’s where I’ve taken my professional life,” she says. “Health issues shouldn’t define you, but can impact you. This struggle is just part of your story.” From her days as a child life specialist to creative arts program manager to her current position, Day always asks herself one question: ‘How do I get people to their very best and what’s that very best going to look like?’
She answers this by honing in on individuals and figuring out what they need to cope and grow. Whether it’s supporting their language and culture or developing their personal interests with music, art, sports, cooking, animals, meditation or yoga, Day refuses to let patients’ physical health be their everything. “We try to help patients understand not just their diagnosis but also their whole person,” she says.
Miranda’s work extends to the entire family. “The hospital has developed so many supportive programs to keep people feeling like people,” she says. This includes parent sleep spaces, quiet work spaces, private rooms to conduct Skype meetings, access to computers and free coffee. “Being in the hospital is a moment in a person’s life. It might be a long moment, but it shouldn’t be the only moment,” she says. She reassures parents that it’s OK to set rules and boundaries with their kids, as well as continue to keep up with their jobs and social life. “Let yourself be a normal parent,” she urges.
Day’s role has allowed her to help patients and families look to the future and have hope for what that future may hold.
Take advantage of the resources offered at the Hale Family Center for Families.