Cerebral Palsy: Samuel's Story

The first thing you notice about 7-year-old Samuel Burroughs is the way his smile lights up the room. Like many kids his age, he loves hanging out with his dad, going swimming, seeing his friends at school and watching Tom and Jerry cartoons.  

But Samuel has some additional challenges due to cerebral palsy, a condition that affects posture, balance, movement and muscle tone. Cerebral palsy can have a variety of causes, but they are typically related to an injury to the developing brain before, during, or shortly after a baby's birth.

A rocky start

Samuel's parents, Sammi and David, remember how difficult things were during Samuel's first few days of life. "Initially, when he was born, we didn't know how long we'd have with him," Sammi shared.  

Although mom Sammi had an uncomplicated pregnancy until nearly 37 weeks, Samuel suffered two brain injuries during a long and difficult labor and delivery. As a result, Samuel has a hypoxic-ischemic brain injury, which means his brain was deprived of oxygen for periods of time during the birth process. 

Soon after he was born, Samuel was transferred to a higher-level neonatal intensive care unit to receive therapeutic cooling, a process that slows down blood flow to allow people with traumatic brain injuries more time for their brains to heal. "He was at 91 degrees for 72 hours," recalled Samuel's father David. "It was a really scary time. We couldn't even hold him until he was four days old." 

Thankfully, Samuel stabilized, and after nearly two months in the NICU, the family transferred their care to Children's Mercy, where he could receive all the types of specialized care that he needed as he grew.

All-around support for Samuel

A Children's Mercy home health nurse was there from the first day they came home from the hospital. In addition to monitoring Samuel's physical health, their home health nurse helped the family to set up all the specialists, therapists and equipment they would need for Samuel's care. 

Getting connected with those resources was very important to David and Sammi. "As a kindergarten teacher," Sammi said, "I was fortunate to already know a lot about First Steps and other early intervention programs, so we got started right away with First Steps and occupational therapy." 

Rehabilitation Medicine doctor Sathya Vadivelu, DO, one of Samuel's health care providers at Children's Mercy, reinforced the importance of Sammi and David's quick work to find therapeutic services for Samuel. "Early interventions absolutely help improve future outcomes for children with cerebral palsy," said Dr. Vadivelu. "When we're facing a diagnosis of cerebral palsy, it can feel very overwhelming to the family initially, but we get to create these wonderful partnerships with families and help them navigate any barriers along the way."

Getting through the tough times

 
Sammi and David echoed that feeling of being completely overwhelmed at first. "Everything comes at you at once," David recalled. "It's terrifying and you don't know what's going on. Every doctor you see is going to throw some really big words at you and it's dark and scary." But the incredible support they received from their community and their care team at Children's Mercy has helped them get through those tough times. 

"We've met some amazing people at Children's Mercy," Sammi shared. "It's nice to have those friendly faces that are so knowledgeable and great at communicating with us. We spent a lot of time inpatient at the hospital in Samuel's first few years of life, and it got to where the nurses would recognize Samuel and bring him little teddy bears when he was ready to go home. They really helped us." 

Their community has rallied around them as well. "Samuel is like a beacon of light in the community. People in town will ask how Samuel's doing, follow his Facebook page—it's amazing," Sammi said.

Dedicated parents and care team make a difference

Samuel's care team at Children's Mercy is equally impressed with the passion, commitment and partnership that Sammi and David bring to every one of their many medical appointments. "Samuel's parents are such good parents and navigators of the hospital system. They understand health care providers almost as if they are providers themselves! They are so patient and understanding with the whole process and amazing advocates for Samuel," said Jenni Woodke-Fields, an advanced practice provider for the Rehabilitation Medicine team. 

Dr. Vadivelu agreed. "Kids like Samuel are very resilient. They go through things that most families don't have to face, but their successes are incredible. They navigate not only the health care system but also school, therapies, and more. We are so lucky to be part of their lives." 

Jenni and her colleague Brittni Walton, a nurse coordinator for the Rehabilitation Medicine team, work closely with the Burroughs family to help ensure good communication between all the different specialists kids like Samuel see. "We work really hard to improve care coordination for families to help them navigate the complexities of the health care system," Brittni shared.

Celebrating a new arrival

The Burroughs family is now on a new adventure: baby sister Iris recently joined the family. "Before Iris was born, we had a lot of discussions with our OB about delivery," Sammi said. While Iris arrived a little earlier than expected, she is at home and enjoying lots of love and smiles from Samuel and her parents.

In spite of the many challenges both behind and ahead of them, David and Sammi are grateful as they reflect on their journey with Samuel. "Sometimes the tough stuff kind of snowballs, but we just try to take a moment to breathe and focus on the good stuff," David shared. 

"It does get better," Sammi added. "We are lucky enough to be Samuel's parents. It may not have been our plan for life, but in the end, it's so amazing."