At Marcella’s 20-week ultrasound, she learned that her unborn child, Brody, had skeletal dysplasia. This news caused a whirlwind of emotions, but little did she know that this journey would lead her to the incredible team at Nemours Children’s Hospital, Delaware, setting them on a path of resilience and discovery.
With this news, Marcella dove into gathering information to understand the unique challenges that Brody might face. Although they lived in Wichita, KS, her research led her to the Nemours Children’s Orthopedics team. Brody’s first appointment at Nemours didn’t come until six months, although Marcella was in touch with the skeletal dysplasia team shortly after he was born. She connected with Colleen Ditro, DNP, CPNP who would become an integral part of Brody’s journey.
As Brody came into the world, so did a definitive diagnosis of diastrophic dysplasia, a rare genetic condition that causes dwarfism. Their local NICU was ill-equipped to handle such a condition, highlighting the necessity of the specialized care Nemours Children’s could provide. With the Nemours Orthopedics team’s guidance, Brody seamlessly transitioned into our system before leaving the hospital. The ability to collaborate with a dedicated group of specialists eased their anxieties and provided Brody with the care he deserved.
Brody’s orthopedic care was led by Dr. Stu Mackenzie and Dr. Michael Bober. Amidst the surgeries, recoveries, and challenges that followed, Brody stayed strong. His surgeries included clubfoot surgery, halo traction, cervical fusion, and MAGEC growing rods. His journey was far from easy, especially when living halfway across the country. The surgeries were steppingstones towards a brighter future, and with every successful recovery, Brody’s resilience grew stronger.
Now, at age 8, Brody now talks about Nemours with a heart full of gratitude, describing how his team not only physically cared for him, but also connected him with other kids with similar diagnoses. Brody’s favorite thing about coming to Nemours Children’s is simple, but profound: “They took great care of me, and I met other friends there that have dwarfism.”
Looking ahead, they are filled with optimism. The immediate future holds the promise of no scheduled surgeries.
Marcella says, “There are very few providers that are truly capable of treating skeletal dysplasia. Seeking out specialty care with a multidisciplinary team-based approach is imperative. The sense of community at Nemours Children’s and the relationships we have made, both with staff and other families we have met there, also helps make it a special place.”
As Brody embarks on a new school year, he looks forward to more vacations, new adventures, and the boundless possibilities that lay ahead.
