Thanks to the Akron Children’s Hospital Palliative Care team and her family, Courtney Boyle doesn’t let complex care needs slow her down. On any given day you’ll find her running with her dad, greeting others at church or working as a barista at the coffee shop at Normandy High School.
“A lot of people misunderstand what Palliative Care is all about or have never even heard of it,” said Christine Boyle, Courteney’s mom. “It’s not hospice and it’s not just for pain. It’s a team of kind and compassionate people who understand a child’s need for comfort and quality of life when faced with complex challenges. They (Akron Children’s Palliative Care) build on Courteney’s strengths and ours as a family to make sure we all have what we need to live the best life possible.”
Complex needs from the start
Courteney, 17, is no stranger to Akron Children’s or to the inner workings of a hospital.
She was born with an underdeveloped brain stem, the most highly developed area of the brain at birth. It controls all inborn reflexes such as crying and suckling, and regulates basic life functions such as breathing, heart rate, digestion and sleep.
“It was challenging for us at first because we were taking Courteney to every specialist around and when we’d see one they’d recommend we see another and so on,” said Christine. “It becomes a lot to manage and, in the midst of it, you’re still trying to live and enjoy.”
For the next several years, Courteney went from specialist to specialist to support her significant physical, cognitive and medical challenges. She was growing, attending school and learning to communicate with others, despite being non-verbal. And, at age 5, she had something big to say.
“Just like any child, we respond to her cues – excitement, wincing – so we knew something wasn’t right,” said Christine. “She had been g-tube-fed for years but developed a feeding intolerance, causing severe pain and weight loss. Although we had experienced complex health issues with Courteney, we had never dealt with chronic pain.”
After medical consultation and her parents’ thoughtful consideration, Courteney began TPN, total parenteral nutrition. This rare feeding technique is given intravenously into a major blood vessel near the heart to get nutrients straight into the blood stream, bypassing the gastrointestinal (GI) tract altogether.
“After making the difficult decision to use TPN, I was visiting an online support group which is when I first learned about all the good Palliative Care can offer kids like Courteney,” said Christine. “It sounded like something we needed….and now I can’t imagine life without them (Palliative Care).”
Palliative Care team
Palliative Care helped bridge the gap between Courteney’s medical needs and her parents’ goals for Courteney.
“Understanding Courteney’s journey beyond her medical file is really how we help families,” said Sarah Friebert, MD, director of the Haslinger Pediatric Palliative Care Center and pediatric palliative care physician at Akron Children’s Hospital. “Talking with her family and seeing Courteney at home helps us understand her family’s priorities so we can better align with them and be their voice when they need us to be.”
Prior to working with Palliative Care, Christine and her husband, Dan, had to follow strict protocols if Courteney got a fever or had other abnormal symptoms.
“If she had a fever, we’d spend 48 hours at the hospital, waiting, worrying…It gets to be a lot of time away, especially when you have another child at home to care for,” said Christine. “Palliative Care understands this disruption and quality of life issues for the family as a whole…They’ve literally saved us from 30-plus hospitalizations over the years.”
Today, Akron Children’s Palliative Care helps coordinate care among Courteney’s multiple specialists at 3 different institutions. In doing so, Courteney can spend more time doing the things she loves most like hanging out with her cousin, Autumn, dancing and attending Young Life Capernaum Club and Camp.
“We communicate treatment plans with physicians and the family to keep Courteney’s care at home as much as possible,” said Dr. Friebert. “This approach allows us to keep a larger lens on Courteney’s holistic care so it doesn’t get fragmented. More importantly, it allows Courteney to be the glittery, smiley girl she is…”
Palliative Care also makes home visits to check on Courteney; advocates for her complex needs for home nursing and enhanced school support; and, helps with medication and pharmacy issues.
“Parents are the experts on their children so we want to recognize this expertise and honor it in the medical system,” said Dr. Friebert. “Our support is intended to allow parents to return to being parents.”
Running with purpose
One way Courteney’s dad embraces being a parent, is by running with his daughter. It started when he realized Courteney loved the feeling of wind in her face while being pushed in her stroller. Soon after, he started jogging with her around the neighborhood and then running in 5ks, 10ks and half marathons.
In 2016, Dan thought the duo was ready for a bigger challenge, 19.3 miles, at the Disney Fairy Tale Challenge in Florida. When his race application was rejected, he learned the race wasn’t ready for them.
“After a great deal of determination, persistence and a few safety accommodations, Dan helped Courteney become the first person approved to participate in a wheelchair in the race,” said Christine. “She is a trailblazer!”
Today, Courteney spends a lot of time training and running with her dad to raise money for the special needs community through their non-profit organization, Team Boyle.
“We’re so proud of Courteney and the difference she’s making for others through awareness,” added Christine. “Palliative Care has enabled Courteney and our family to do great things and live life to the fullest.”