GRAND RAPIDS, Mich. (WOOD) — Jeven Anderson is 16 months old but may look back on his pictures one day and think he was a tiny pilot. He wears a helmet, decorated with aviator glasses and other aviation imagery, 23 hours a day.
While one in 10 babies may require a helmet to fix flat spots on their heads, Jeven’s helmet is for a more serious condition known as craniosynostosis — a birth defect where the bones in a baby’s skull join together early. As the brain grows, it can push the skull into an oblong shape and cause issues with vision, speech and other areas.
Jeven’s mom, Kelli Anderson, has family in Holland, but she and her husband, Mike Anderson, have spent most of their time in Brazil, where they are missionaries. All of their children have flown in a lot of planes as a result of their work, but this diagnosis led to even more flights.
“I would have to travel down to Texas, and he’d get a scan one day, and then we’d pick up the helmet a couple of days later,” Kellie Anderson explained.
Texas is where they found a doctor who pioneered a minimally invasive laparoscopic surgery to treat Jeven’s condition. They’ve been through this before with Jeven’s brother and one of his sisters and knew exactly what to look for when each child was born since their dad had the same condition. Things were different back then, and the surgery was more invasive.
“My cousin had one of the very first surgeries trying to correct it, and the outcome wasn’t very good. When I came along, my parents were like no, we’re not going to do it,” said Mike Anderson.
In the absence of treatment, Mike Anderson experienced symptoms that still affect him today, including poor eye vision and speech issues.
“Plus the brittleness of kids teasing you for having a very crooked head,” he added.
After taking their children to the surgeon in Texas for the initial procedure, the Andersons flew back-and-forth between Brazil and the Lone Star State for the next step in the treatment process, the helmet. That is until Kelli Anderson discovered a hospital offering that highly specialized treatment where her family lives in West Michigan.
Mary Free Bed Rehabilitation Hospital’s orthotic department helped Jeven with his fifth and final helmet.
“We specifically use an orthotic device, called the cranial remolding helmet, to help shape the baby’s head… we use it to get the shape of the skull that we want,” said Melissa Cordial-Stout, a cranial remolding specialist.
She learned her trade from the same surgeon in Texas who operated on Anderson’s children. Kelli Anderson was thrilled to learn of the connection, and Cordial-Stout was impressed with the family’s knowledge of the condition.
A baby with craniosynostosis doesn’t wear just one helmet since the head grows so quickly during that first year of life. It takes between three and five helmets during treatment, and someone like Cordial-Stout ensures they last as long as possible and are as comfortable as possible.
After scanning Jeven’s head, she ordered the helmet and then fine-tuned it. She said she was “running across the hallway, back and forth, trimming the plastic, smoothing the foam. They send the helmet to us very big, so when I first put it on (Jeven), it smushed his ears, was long on his eyes and neck.”
Cordial-Stout uses toys and her gentle manner to distract the children while she draws lines on the helmet so she can trim around the plastic and goes through the process several times until it’s perfect. But, for the Andersons, the process doesn’t stop there.
Kelli Anderson put stickers on their daughter’s helmet to try and have fun, but the decorations evolved and became more elaborate with each helmet. They eventually started using wraps, similar to what is on cars for advertising.
“Sometimes, when a baby has a helmet, you can have some stares. When it’s all decorated, instead of stares, you get smiles,” Kelli Anderson said.
“It changes from what’s wrong with your baby — whether they say it or not — to how cute! So it’s really funny and an interesting change,” said Mike Anderson.
The Andersons also created a book for Jeven, where Kelli photoshopped him into places all over the world, like Paris and Italy. They used his book and his siblings’ books as educational tools in their missionary work, teaching their friends in Brazil about these places around the world.
Jeven will wear his current helmet from Mary Free Bed until he is about 18 months old, then he will be helmet-free. After wearing it for 23 hours every day, the Andersons said it will be a big transition.
“It’s been such a big part of our journey, so to think this is it, it’s kind of a little bittersweet,” said Kelli Anderson.