Twirling like a ballerina, Zinnia DeMaria’s feet never touch the ground.
The jewel-bedazzled metal halo attached to her skull holds her upright, supporting her 7-year-old frame as she spins and dances.
It’s 5 a.m. at Spectrum Health Helen DeVos Children’s Hospital and this spunky kid is ready to seize the day.
“Nothing will stop me,” Zinnia says. “I can swing and do the twist and go crazy!”
Zinnia, who has spina bifida, had her first surgery on the day of her birth, June 12, 2012, and spent 66 days in a NICU in Eastern Tennessee. She had three more surgeries before she went home, and doctors there initially gave the family a grim outlook.
You see, Zinnia’s spine is extremely unique. No one else in the world has a spine quite like it. It is curved like an upside-down question mark due to scoliosis and lordosis.
“Her spine was literally folding over on itself,” her mom, Dana, says.
‘She thrives in spite of them’
Her parents, Kevin and Dana DeMaria, say the diagnosis felt overwhelming at first.
“We found out that Zinnia had myelomeningocele, which is a severe form of spina bifida, at 20 weeks at our anatomy scan,” Dana remembers.
“We went home in shock. We mourned the healthy child we thought we were going to have and prepared ourselves for the special child we were getting.”
Doctors in Tennessee told the couple Zinnia would never walk, she’d suffer severe brain damage, that she’d be paralyzed from the waist down.
Zinnia has proved all those dire predictions wrong.
“She thrives in spite of them,” Dana says. “Zinnia started walking with a walker when she was 3. She is a smart cookie and excels in school. We were prepared to take care of a child in a vegetative state and Zinnia is just the brightest, happiest and most creative little kiddo out there.”
When the family moved Zinnia’s care to Helen DeVos Children’s Hospital in Grand Rapids, Michigan, they found hope in pediatric orthopedic specialist John Kemppainen, MD, and other specialists.
Here, Zinnia has had tissue expanders, bladder and bowel surgeries, skin reconstruction surgery, eye surgery, a feeding tube and tonsillectomy. Then the halo.
Dr. Kemppainen uses the word “unique” a lot when describing Zinnia and her scarring and spine formation. He has shared her condition with doctors at centers across the United States as her case is quite rare.
“She was probably the most challenging case I have seen since I have been in practice,” he says.
Zinnia’s most recent surgery would count as No. 22—a lumbar spinal fusion.
Zinnia’s 55-pound frame had to be supported by a halo for six weeks prior to this latest surgery.
“The halo is something that’s pinned and attached to her head,” Dr. Kemppainen explains. “Gravity slowly straightens her spine out. It’s surprisingly not painful for kids.”
Kevin says Zinnia likes the halo because at home she uses a walker and a wheelchair to get around. The halo provides her with the first opportunity to be fully upright without having to hold on to something.
Her room is decorated in bright colors and unicorns that match her outgoing personality. There are photographs of her scans hanging on the hospital wall, showing week-by-week progress of the shape of her spine slowly straightening.
“It’s uncommon for kids to use halo gravity traction,” he says. “We probably only use (the halo) two or three times per year at Helen DeVos Children’s Hospital. We were seeing about 5 degrees a week improvement when she was in traction… I was pretty happy with the amount of correction we were able to get.”
A doctor in the making
Zinnia is obsessed with her care team.
“I got a doctor book, finally,” she announces one day. “I have been wanting one all my life. It’s all about doctors. I think I’ll be a doctor one day.”
Much of her play mimics what happens in the hospital and is medically focused.
“That’s how she processes her trauma,” Dana, says. “Right now, that’s pretty much the only way we play around here. There’s always a doctor involved.”
Zinnia has a pretty impressive medical vocabulary for a 7-year-old.
“When you can’t play outside and do the things other kids do, you spend your time learning about things,” Kevin says.
She’s a very smart kid, that’s for sure.
“Why is Dr. Tate running?” she asks. “Well, sometimes doctors have to rush. We all do. I used to think there was only one doctor in the hospital, but now I know there are so many different kinds.”
Zinnia is in second grade at Shoreline Elementary in Whitehall and enjoys playing in her room with Barbies at home. When she spends a lengthy stretch of time in the hospital, however, she plays with her friends from the Child Life team.
“There are hard days and she does deal with way more than her share of hardship and pain but she got an extra dose of spirit, grit and joy,” Dana said. “She has something that other kids don’t have and it is very obvious that she has a big purpose in this world. She brings love and optimism with her everywhere she goes.”
Silver lining spine
In preparation for the spine fusion, Zinnia got an X-ray every week. Progress is quick.
“This means her back got straight so fast they are going to do the surgery sooner than expected and she’ll be heading home before she knows it,” her dad says.
The family is always looking for the silver lining of every situation, every scan.
“The gravity with the halo is helping her c-shaped spine become straighter,” he explains. “It will never be completely straight, but we should be able to get it as straight as we can. And then the upcoming surgery will straighten it out even more using pins and plates to hold it in position.”
With this surgery, patients must come back every few months for adjustments and checks to be sure the rods grow along with the patient. The fusion surgery will essentially shorten her spine and make room for future growth while also removing the curved portion of her spine.
“You never expect to see your child in a halo, but Zinnia always bounces back faster than we expect her to and she continues to impress her doctors,” Kevin says.
As she prepares for surgery, she seems not even slightly nervous. If anything, she’s more excited about her return to everyday life.
“I just can’t wait to go home after my surgery,” Zinnia says.
“Zinnia knows how to work the room,” Kevin shares. “She has a little anxiety, but she’s been through it all before.”
Fast forward a couple of weeks, and Zinnia is through her initial recovery and nearly ready to head home.
She has been in the hospital 55 days this time.
“Last time we left the hospital I said, ‘Let’s say goodbye to our 11-story mansion,’” Kevin says. “When you stay here, you see it as your home…the entire space…and everyone else is a visitor.”
Zinnia’s family has been intentional from Day 1 to make sure she has the same opportunities other kids have.
“We, as a family, do a lot of hiking and spend a lot of time outdoors. So we just carry her on our hikes,” Dana says. “We have a beach wheelchair for beach trips and she rides along on kayak trips. We try to remove barriers or make accommodations so she is always able to participate. Her physical limitations are a part of her and always will be so it’s OK to acknowledge that she is different but we want to reinforce that different is good.”
It’s been a month since Zinnia’s surgery. There are two children’s pools in the back yard and a hammock.
One pool is just for Zinnia. Wearing her pink turtle-shell protective vest, she situates herself in a chair in the middle of the pool. A glamorous hat and an umbrella provide shade as she dips her feet into the cool water below.
The other pool has a bit less water and is for her younger sister, Poppy. They play in their pools, splash back and forth, giggling.
Doctors are monitoring her progress from the recent surgery and physical therapy. The goal is to get her walking a bit more, and even sitting and standing on her own.
“Zinnia is doing really well,” Dr. Kemppainen says. “We were able to get her out of her brace and she’s progressing well. She has started with physical therapy and continues to build on her strength.”
Fast forward three months and it’s a brisk fall morning with changing colors in the trees and Zinnia is out on the football field supporting the Whitehall Lil Vikes.
As her range of mobility increased, she joined the cheer leading squad—something she always wanted to do.
“I’m on the board for our school, and we have all taken care of Zinnia,” says Jessie Howe, cheerleading rep for the Lil Vikes. “She was really excited about it, so we got her a uniform and she joined the team.”
“Fire up, fire up, fire up! Reds on Fire!” Zinnia exclaims. “My brain is on turbo mode. When I cheer, it’s always on turbo mode.”
During the final game of the season, the girls excitedly show off their skills.
One thing’s for sure: Zinnia won’t let anything stand in her way.