Family rallies to help child understand medical treatment
PITTSBURGH — It was not easy for Kelly Brennan to watch as her then 2-year-old daughter Caroline was diagnosed with a rare autoimmune disorder.
It was even harder when Caroline began monthly antibody infusion treatments at University of Pittsburgh Medical Center for juvenile dermatomyositis, a rare, potentially life-threatening disease that impacts the muscles and skin. It affects less than 5,000 children in the United States.
Due to Caroline's young age, her mother could not find the words to explain the process or prepare her child for what was happening. "I found the best way (to prepare) a toddler or young child is through a book or TV show," she said.
She found certain episodes of children's programs that demonstrated what it was like to go in for a physician's checkup or to the dentist, "but I couldn't find anything that talked about an IV put in your body to get an infusion."
That sparked the question: Why not create one?
Kelly decided to write a children's book that described the experience in a way children could understand, and "Caroline's Infusion Day" was born.
It went on sale recently, nearly two years after Caroline's first infusion appointment. The book takes a child through an infusion day from start to finish, and demonstrates what they will experience, feel and see.
Kelly's niece Elleigh Culver stepped in to help.
At first, the young artist was nervous about the offer. "But as I started, I thought I could finish and do it," said Elleigh, now a 16-year-old Sheridan High School student.
She illustrated the words, going off of cellphone pictures of Caroline's first infusion to draw the pictures. She focused on the emotions of the moment, even though she couldn't be there to experience it herself due to COVID-19 restrictions at the hospital.
Caroline's character at first looks nervous for what was to come. The girl's demeanor changes as the book goes on, beginning to appear happier and more at ease as she grows accustomed to the unusual medical environment.
Kelly provided her synopses of each photo, which Elliegh used to capture the moment. She said she chose saturated, bright colors that a child could find comforting.
That experience, Elleigh said, has helped her grow closer to her aunt and cousin and understand Caroline's condition. She's now thinking about becoming a professional illustrator.
"It just gave me so much perspective on little kids that do that, their strength. Not even the little kids — the parents that walk them through that," Elleigh said. "The parents are learning as they go through it too."
Sensory details like the childlike images and colors keep the child engaged, Kelly said. She's received positive feedback from families who are helping their children understand how the procedure doesn't have to be a scary experience.
"I really think the reason that is is because of the illustrations – it’s so emotionally inviting, endearing and playful," she said. "I think that Elleigh’s artwork makes the book what it is."
Caroline has responded well to treatment in the last few years, her mother said. She is physically able to do anything she wants for a child her age, although her endurance is not 100%.
"But it is a drastic improvement from where we started," Kelly said.
You can purchase "Caroline's Infusion Day" online through Amazon and Barnes & Noble.
ecouch@gannett.com
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Twitter: @couchreporting
This article originally appeared on Zanesville Times Recorder: Family rallies to help child understand medical treatment
