Adopted Child Gets Much Needed Treatment for Spinal Muscular Atrophy (SMA)
Like many of us, the Coyle family spent the spring and summer months of 2020 confined to their home, as schools and businesses across the country closed in response to the COVID-19 pandemic.
Life changed abruptly as once-daily routines like morning work commutes ended, but the question remained for parents Beryl and Nathan Coyle: How would they continue to get medical treatment for their 8-year-old daughter, Campbell?
Adopted from China in September 2019, Campbell was born with spinal muscular atrophy (SMA) but never received proper treatment for the neurodegenerative disorder.
Doctors in their hometown of Georgetown, Ky. quickly pointed the Coyles to Cincinnati Children’s for their daughter’s much-needed comprehensive care, including ongoing physical and occupational therapy.
Telehealth Provides Virtual OT/PT Sessions
These sessions have proved essential to her continued development. Beryl did not want them to stop. So when she could no longer physically transport Campbell to Cincinnati for therapy sessions, our therapists began coming to her – via the internet.
Telehealth is virtual technology that allows patients to connect with their care team through video visits without having to make a trip to the hospital or clinic.
Beryl believes the virtual therapy sessions, which were tailored to specific household tasks, have made a profound impact on Campbell’s personal development.
“I feel like things (PT and OT exercises) were more directly related to what do we need to work on as far as making things functional in the home. Not just working on gaining some strength or working on writing letters or whatever. It’s more, what do we need to work on to make this task easier for her?” said Beryl.
Ever since they made the decision to adopt Campbell, the Coyles knew it would be a difficult road ahead for her – moving to a foreign culture, learning a new language and beginning medical treatment and therapy. But Beryl, who is a pediatric physical therapist herself, felt an immediate connection and desire to help.
“For children like her, it is much harder for them to become adopted. And also, knowing that the longer a child like her sits in an orphanage without medical treatment that is available, that was just… my heart couldn’t take that,” she said.
Now nearly a year into her treatment, Campbell is doing much better. Jen Dorich, an occupational therapist III, has seen the improvements firsthand, during both clinic visits and more recently, through telehealth.
“The beauty of seeing Campbell via telehealth for her OT was that she had goals related to participation in daily activities in her home environment. So, I could actually guide her and her family in performing activities like dressing, helping prepare family meals, and working on school tasks right in the environment she routinely does these things,” said Dorich.
“It makes such a difference because in the clinic setting I can only simulate what home is like and sometimes the two environments can be very different. When the child and family’s goals relate to activities that they are performing in their home setting this feels like a more impactful therapy session.”
Family Fun vs. Household Chores
More than anything, Campbell just wants to be treated just like anyone else in the family. And while she’s right there in the middle of all the family fun when it comes to crafts, games or swimming, Campbell has something else in mind. Something most kids complain about: chores.
“All of our other kids have daily chores that they do, and believe it or not, her goal is to be able to do the chores with the kids. She kind of feels left out,” said Beryl.
“She wants to be able to help out more around the house, and that’s why we have worked on the cooking and the cutting and things like that – to be able to allow her to participate more in the chores.”
Overall, Beryl said she appreciates the ease and convenience of Cincinnati Children's. Whether its telehealth or in-person clinic visits, she likes knowing she can meet and talk with a variety of specialists in one setting about her daughter's various needs, ranging from rehabilitation medicine to nutrition therapy to pulmonology and interventional Radiology.
“For us, it’s the one-stop shop. Knowing that to see all the specialists, I don’t have to go anywhere else,” she said. “Even the way things are designed. Knowing that it’s kid-friendly. Knowing that she is getting the best care because everybody there is a pediatric specialist. It’s why we continue to make the drive.”
A drive which they make at least once every four months so Campbell can receive her SMA medication, nusinersen (Spinraza). The drug, which significantly slows the disease’s progression, is injected into the fluid surrounding the spinal cord through a needle inserted into the lower back.
“We went from weekly visits with Telehealth, to now we are just kind of taking it as we need it,” said Beryl. “From here forward, I think it will just be changes to what we we’re doing at home as she gets stronger with the medication and as she gets stronger with the exercise plan that has been established for us.”
(Published September 2020)