With pep in her step and a happy disposition, 2-year-old Madelyn Trachsel has covered a lot of ground in a short amount of time thanks to her own determination, her family and her Akron Children’s care team. While her spina bifida causes her some challenges, she works hard to be her best each day, which typically starts with a smile and putting on her fabulous purple shoes.
“We call Madelyn a rock star because she’s awesome and is always so happy,” said mom, Olivia. “She’s very good at doing what’s asked of her at home – from taking daily medications to having multiple catheterizations each day – and looks forward to seeing her doctors and therapists … she just loves them.”
Madelyn met her first specialist, Dr. Tsulee Chen, just hours after being transferred to Akron Children’s neonatal intensive care unit (NICU), to undergo back closure surgery to help prevent infection and save her spinal cord from more damage. A few days later, a temporary shunt was placed in Madelyn’s tiny head to drain the fluid in her skull. A week later, a permanent shunt was placed.
“I delivered Madelyn via C-section so I wasn’t able to leave my birth hospital right away. I was so thankful I had already met Dr. Chen so I knew she was in good hands,” said Olivia. “Madelyn spent 32 days in the NICU. The staff was so wonderful with her … they supported all of us the entire time we were there.”
While in the NICU, doctors discovered Madelyn was suffering from an imperforate anus defect. In support, Dr. Timothy Pittinger performed colostomy surgery on Madelyn that involved fitting her with a pouch attached to the outside of her body to collect waste products.
After graduating from the NICU, Madelyn began coming to the Myelodysplasia (Myelo) Clinic for testing and follow-up care with a number of specialists. A few months in, she started physical and occupational therapy, which would become part of her weekly routine for the next 2 years.
As her family got used to managing her daily care needs and ongoing doctor and therapy appointments, Madelyn was also getting frequent ear infections. The ENT specialist suggested she have ear tubes placed to relieve the fluid buildup, as well as have her hearing retested since she failed the newborn hearing test.
“The results came back that she couldn’t hear at all in her right ear,” said Olivia. “After her ear tubes were placed, we started her with speech therapy.”
“Miss Lisa (speech therapist) was great with Madelyn. She wasn’t saying any words at all when she started, and now she’s talking up a storm,” said Olivia. “I can’t say enough good things about Miss Margaret (occupational therapist). Kate (physical therapist) has become one of our best friends; she’s like a family member. She’s with us on good days and bad. She’s there for Madelyn no matter what.”
While Madelyn has made great strides in therapy, she still requires a colostomy bag and catheterizations multiple times a day. The ongoing care she needs often requires assistance from her pediatrician, specialty providers and urgent care visits.
“Because of Madelyn’s condition, she’s prone to urinary tract and ear infections. Having an urgent care nearby really saves us time and money instead of going to an ER,” said Olivia. “We’re thankful Akron Children’s new center (in Boston Heights) will have an urgent care and a number of the specialties we need for Madelyn, so we’ll have more options for appointment times and locations.”
While many of the services Madelyn needs will now be under one roof at the new health center – pediatrics, rehabilitation services, urology, ENT, orthopedics, neurology and urgent care – there’s one aspect of the building Madelyn won’t want to miss.
“We hear the therapy area is nice and big, and it has an indoor track. Madelyn just took 12 independent steps at therapy, so I think she’s going to love the new space,” Olivia added proudly.
Good news: there is an indoor track at the new health center in Boston Heights. It’s built specifically for kids to practice their skills and, for Madelyn, that means taking steps in her signature purple shoes.
Free community open house
The community is invited to get a sneak peek of the Akron Children’s health center in Boston Heights, located at 328 E. Hines Hill Road, on Sat., Sept. 14 from 10 a.m. – noon with a ribbon-cutting at 11 a.m. with Madelyn. The event is free and open to the public. It will feature self-guided tours, light refreshments and family entertainment.