As a 9-year-old with spina bifida, Hope Gonyon knows more medical terms than the average kid: tethered cord, MRI, scoliosis.
But her expansive vocabulary does not seem to include the phrase “taking it slow.”
There are just too many fun things this energetic kid wants to do.
At her home in Caledonia, Michigan, Hope buzzed around her backyard on a four-wheeler, leaning hard as she rounded the chicken coop.
She switched to crutches and showed off her trampoline, swing set and the volleyball net where her 11-year-old sister, Sydney, practices.
And she talked about her career plans.
“When I grow up, there’s so many things I want to be. I want to be a veterinarian,” she said. “Or the best horse rider.”
One thing she does not want: to rely on her mom’s help every time she needs to use the bathroom.
For Hope, the solution required a surgery at Spectrum Health Helen DeVos Children’s Hospital to create channels connecting her belly button with her bowel and bladder—allowing her to access them with a catheter.
“It just gives her a lot of independence,” said her mom, Kara Gonyon.
Before the surgery, handling bathroom needs “was a lot harder,” Hope said. “I had to have Mommy help me because I couldn’t do it myself.”
All in the details
Hope, a third-grader at Paris Ridge Elementary School, talks about life with spina bifida with the same openness as she talks about her favorite books (“The Dork Diaries”).
“We’ve never been shy about talking about her medical stuff with her,” Kara said. “It is part of her life. She’s always going to have to talk about it.”
When she started a new school in first grade, Hope addressed her class, explaining why she used crutches and leg braces.
“She told kids, ‘My legs don’t work the same as yours,’” her mom recalled. “She looked at one little boy and said, ‘See, you have glasses because your eyes don’t work like other kids.’”
Kara and Christopher Gonyon learned Hope had spina bifida when she had an ultrasound at week 32 of her pregnancy.
Spina bifida—which means cleft spine—involves the incomplete development of the spine and spinal cord.
It affects 1,500 to 2,000 of the 4 million babies born each year in the U.S. It is the most common neural tube defect, according to the National Institutes of Health. It can cause partial or complete paralysis of the parts of the body below the opening in the spine.
When Hope was born at Spectrum Health Butterworth Hospital, she had the most severe form of spina bifida, called myelomeningocele, in which her spinal cord was exposed through an opening in the spine. Nerve endings lay in a small sac, which looked like a blister on her spine.
Hope underwent surgery as a newborn to close the opening in her spine.
“Spina bifida is known as a snowflake condition because not one child with spina bifida has all the same difficulties,” Kara said.
The size of the opening and its location on the spine determine which nerves are affected—and the impact on a child’s development.
Although spina bifida affected Hope’s ability to move her legs, she could still walk as a toddler, using a walker.
Around age 2 1/2, she began to lose mobility, because scar tissue from the surgery pulled on her spine, a common occurrence for children with spina bifida. She underwent a second operation—called a detethering—to remove the scar tissue.
“She was pretty much back to normal within a week,” Kara said.
As she grew, Hope learned to walk with leg braces and crutches, using a wheelchair to cover longer distances.
An appendix connection
An outgoing, social girl, she liked her independence.
But like many children with spina bifida, she needed help with bathroom tasks. Her mom would insert a catheter to drain her bladder and give an enema to empty her bowels.
At age 7, she underwent surgery to allow her to perform those functions herself.
Pediatric urologist Theodore Barber, MD, performed the operation at Helen DeVos Children’s Hospital.
Dividing Hope’s appendix in two, he used one half to create a connection between her bladder and belly button. This allows Hope to catheterize herself, by inserting the tube into the opening in her belly button.
The other half of the appendix remained connected to her bowel at one end. Dr. Barber brought the other end to the belly button. Through that opening, Hope can give herself an enema to flush out her bowels.
The operation “is kind of a glorified appendectomy,” he said.
“Although not every patient with spina bifida is a candidate for these procedures, Hope was a excellent candidate,” Dr. Barber said. “She is really bright, independent and motivated. The procedure should allow her to achieve long term independence with her bowel and bladder management.”
Over the next eight months, Hope gradually took over handling all her bathroom tasks by herself at school and at home.
“It makes sleepovers easier,” her dad said.
“It makes it easier just for hanging out with friends or going to Grandma and Grandpa’s,” her mom said.
Hope continues to see a half-dozen pediatric specialists for regular checkups. They monitor her legs and hips, her scoliosis and her spine. They look for signs of extra fluid in her brain in case she needs a shunt.
“I have too many doctors,” Hope said. “It’s crazy.”
Despite the doctor’s appointments, she keeps a busy schedule with school, friends and family activities.
For kids who don’t have spina bifida, she wants them to know this: “It makes things kind of hard, but you need to stay happy and you can do it.”