Quinn Janssen plunked on the warm sand at Grand Haven State Park, clutching a nearby stick.
She scooped her hand into the sand, thrust it above her head, and grinned as grains slowly sifted through her grip.
Her mother, Laura, watched Quinn’s next move carefully. The just-turned-1-year-old bounced to her knees and crawled into the gentle lapping waves of Lake Michigan.
“She has no fear,” said Laura, laughing.
Quinn has been journeying to new frontiers all her young life. And Laura has been trying to let the grains go lightly.
Born with a fused skull and without a typical baby “soft spot,” she’s the recipient of a new technology called distraction osteogenesis.
Laura, who worked in a pediatric medical office for several years, had never heard of Quinn’s diagnosis—bicoronal craniosynostosis. Because her skull couldn’t expand on its own, it caused pressure on Quinn’s brain.
“The brain will grow in an odd shape,” said John Girotto, MD, Quinn’s Spectrum Health Medical Group pediatric plastic surgeon. “You see developmental delays with increased cranial pressure.”
Laura said she and her husband, Jesse, were super shocked with the diagnosis.
“It was scary,” she said. “We found out it’s not common.”
At first, they thought Quinn’s sagging and folded forehead was because she was head-down in Laura’s womb for so long. But a scan cast the image of the fused skull.
According to Dr. Girotto, who performed Quinn’s surgery at Helen DeVos Children’s Hospital, about 1 in 2,000 kids is born with the condition.
“Having more than one growth plate fused like Quinn does is less common,” Dr. Girotto said.
Dr. Girotto performed the two-stage operation in December and March.
First, Dr. Girotto cut Quinn’s skull to encourage her body to produce new bone. He then installed a metal plate (a distraction device), which slowly stretched the healing bone. In effect, Quinn was able to grow herself a new skull.
Laura and Jesse had to advance screws on the device several times a day, which encouraged bone growth of up to 1 millimeter per day.
“It’s pretty scary,” Laura said. “Neither my husband or I had ever had major surgery. It was kind of shocking when we saw her after she came out of surgery with distractors that came out of her forehead. Once we were able to hold her, the recovery was like that (fingers snapping).”
Laura said a Shakespeare quote fits her daughter perfectly: “though she be but little, she is fierce.” Prior to Quinn’s first surgery, an aunt and cousin had a necklace engraved for her with that quote.
During the second surgery in March, Dr. Girotto removed the metal plate and screws and remodeled little Quinn’s forehead and the area around her eyes.
“In the old approach, you moved all the bones and held them in place with plates and screws,” Dr. Girotto said. “This is a new technology and Helen DeVos Children’s Hospital is one of the leaders in providing this technique. This is not something that’s done everywhere.”
Fortunately for Quinn, she and the Lake Michigan seagulls are both soaring.
In addition to her love of swimming in Lake Michigan and playing in the sand, Quinn delights in petting and sitting on the backs of the Janssen family’s horses.
“She loves dogs, she loves horses,” Laura said as a slight breeze blew in off the water. “She has a sweet little soul. She’s a really good baby.”
If all goes as planned, Quinn should be surgery-free for a long time.
“It felt like so long when we were waiting for the surgeries to happen,” Laura said. “When it was done it was just such a relief. We felt we finally could just enjoy her and really not have to worry anymore.”
Laura said Dr. Girotto and others they encountered on their medical journey constantly reassured them.
“Dr. Girotto said to us, ‘You guys are family now,'” Laura said. “He’s going to be part of our lives for the next 18 years. He made us feel so comfortable, like this is going to be OK. He made it better than OK.”
Laura swooped Quinn from the sand and lifted her up toward the sun. The light glistened and danced off Quinn’s wispy blonde hair.