Forward. It’s a path 5-year-old Madelyn Traschel has been on from the start. Affected by spina bifida, she has been managing regular doctor visits, surgeries and therapy sessions to keep her moving in the only direction she knows – forward.
We first shared Madelyn’s story a few years ago at the opening of the Akron Children’s Health Center, Boston Heights. At the time, she was just taking independent steps and working hard in speech therapy, while managing other medical complexities with courage and spunk. Today, she’s covering even more ground, asking questions and setting big goals for her future.
“Madelyn is such a smart cookie! She has such an amazing vocabulary that it blows us away sometimes. She talks up a storm and will hold a conversation with just about anyone,” said proud mom, Olivia. “She still uses AFO’s (ankle foot orthosis braces) for walking but, other than that, she doesn’t need any other devices to get around.”
For a child affected by spina bifida, symptoms and challenges can vary depending on the type. Madelyn requires close follow-up with providers and therapists to maximize her function and prevent complications from bladder and bowel problems, hydrocephalus, hearing loss and leg weakness.
Each month, Madelyn goes to physical therapy and meets with Kate Clancy LeVan, who she’s been seeing since she was just a few months old. She also sees specialists at the Myelo Clinic, including gastroenterology, vision, neurosurgery, urology, developmental pediatrics, orthopedics and physiatry every 6 months to monitor her conditions. Additionally, she meets with audiology to determine the best way to manage profound hearing loss in one ear.
Madelyn has had 12 surgeries in all – from spinal closure just after birth and ear tubes to more complex surgeries like her most recent with Timothy Pittinger, MD, pediatric surgeon at Akron Children’s, for her colostomy. It is common for people with spina bifida to have problems controlling and/or emptying their bladder because the nerves in the spinal cord didn’t form properly in utero. For Madelyn, this means she is catheterized 4 times a day to help protect her kidneys and prevent urinary tract infections.
Madelyn’s family knows regular check-ups and therapy sessions help Madelyn move forward, but they also know the path ahead can have challenges.
“She is starting to see similarities and differences with her peers and asking questions about it like, ‘Why do I have a bag and my friends don’t? Why can’t I go to the bathroom? Why can’t I run fast like my friends?,” said Olivia. “We’ve always been focused on helping her achieve milestones so this is new territory for us…We want her to continue to be her best, understanding that sometimes that may look different and that’s okay.”
Today, Madelyn is enjoying school, especially her teacher Mrs. Alexander, therapeutic horseback riding and being outside walking, riding her bike and playing soccer with her big brother, Logan. She is also setting goals for her future.
“The last time she was in neurosurgery, Madelyn told Shawnelle Contini that she wants to be a doctor when she grows up and work with her,” said Olivia. “We love Akron Children’s and are thankful for all of the providers and therapists who care for Madelyn and her needs.”
Learn more about how Akron Children’s supports patients with spina bifida at the Myelo Clinic.