SPRINGFIELD — In a house right off the road on Main Street, seven pairs of shoes are scattered across a wooden front porch with a sign on the door that reads, “Excuse the mess: Our children are making memories.”
One pair of the shoes belongs to 2-year-old Matthew Price of Springfield. He has a lightning bolt scar on his head; it zigzags from one ear to the other.
His parents, Dustin and Chesney, said their memories of their youngest child include the long succession of doctor’s appointments, hospital waiting rooms and gnawing fear. But four months after a community fundraising effort enabled their son to fly to Texas for a life-changing surgery, they now say that part of their lives appears to be over.
Matthew was born with a rare cranial birth defect called metopic synostosis, a condition that affects one in 15,000 babies, according to data from Boston Children’s Hospital.
“We knew that something was wrong the minute we saw him,” Chesney Price said.
Metopic synostosis is a type of craniosynostosis, a deformity found in infants that changes the growth pattern in their skull. Essentially, Matthew’s head was shaped like a triangle. And while newborns’ heads are often somewhat conical after the birth process, Matthew’s head did not resume a smoothly rounded shape after birth.
His metopic synostosis caused a premature hardening of his cranial sutures, the joints between the seven cranial bones.
The joints are made of strong, fibrous tissue and hold the cranial bones together, but usually they are flexible in newborns’ brains, allowing plenty of room for growth.
Matthew’s condition was severe and life-threatening. Dustin Price said some children with metopic synsyosis suffer severe brain damage or a painful death.
When Matthew was 9 months old, in November 2015, Oregon surgeons took slits of bone from the back of his head and puzzle-pieced them back together around the front sides of his head, Chesney Price said.
The surgery was intended to return Matthew’s head to a normal shape, so that his brain could grow, but when she saw him after surgery, his mother had a gut feeling it wouldn’t be enough.
She was right, and her youngest child’s skull returned to a triangular shape.
What’s more, when Matthew should have been on his way to speaking in complete sentences, he had trouble uttering single words.
“It was kind of scary, because he was losing developmental ground, which was telling us that his brain was being squished,” Dustin Price said.
The Prices began looking for a surgeon to perform a second cranial surgery on their son. They found that the skills and experience of craniofacial surgeon Jeffrey Fearon of Dallas, Texas, most closely suited Matthew’s case.
Fearon proposed taking donor bone from the back part of Matthew’s skull and moving it to his forehead to create a solid piece of bone that would enable his brain to grow normally.
But the Prices’ insurance wouldn’t cover a surgery in Texas.
Faced with their son’s rapidly deteriorating condition and the surgeon’s schedule, the Prices had two months to raise $50,000 for the operation and travel expenses.
“We discussed the possibility of selling our home,” Dustin Price said. “But the community stepped up.”
The Prices created a GoFundMe account that rapidly raised more than $30,000. Personal checks and PayPal payments flooded in. The Children’s Craniofacial Association paid part of the cost of accommodations and airfare, Chesney Price said.
All together, the donations hit $50,000, and the Prices took Matthew to Dallas.
The five-hour surgery was performed Feb. 28 in Medical City Dallas Hospital. The surgery went perfectly.
“I saw him, and I just thought: We’re done,” Chesney Price said. Her gut feeling was right again.
A brighter future
On a recent afternoon, Matthew looked pretty much like any other 2-year-old. He spoke softly, but in full sentences, and he played with his siblings, Adrien, 10, Caden, 9, Levi, 7, and Benjamin, 5.
The younger ones were running around with squirt guns and plastic swords, looking forward to eating pigs-in-a-blanket and roasting marshmallows in the fire pit on the family’s property.
Dustin Price said Matthew’s cognitive development has caught up to that of his peers, but his recovery was not easy.
Matthew’s eyes were swollen shut for two days after the surgery. It took six weeks before he could get up to play with his three brothers and his sister.
Matthew’s appearance also drastically improved, and Chesney Price documented the changes to share with other parents facing this condition in photos posted to Matthew’s Facebook page, “Cranio Warrior Matthew.”
Changing the size and shape of Matthew’s skull affected other parts of his face, but aside from one slightly droopy left eye, nothing looks out of the ordinary.
“He should be like any other little boy,” Chesney Price said. “He can play. He can do sports. He can do absolutely anything any other kid can do.”
But he’ll always carry the marks of his early ordeal. His scars will fade to white, but the zigzags will be with him forever.
That’s fine by his doting, grateful mother.
“I love his scar,” Chesney Price said. “I think it’s beautiful, and it’s just a reminder to me of how lucky he is.”
The Prices consider themselves fortunate as well to live in such a generous community.
Chesney Price said that dozens of anonymous donations poured into their GoFundMe account after The Register-Guard wrote a story about Matthew in December. People they had never met made donations ranging from $5 to $500.
The King family, the owners of King Estate Winery, contributed $10,000.
“We can really never look at the community the same, because every time I see someone at the grocery store, I think, did that lady donate money?” Chesney Price said, her eyes filling with tears as she held her squirming youngest child on her lap.
“The hard things that you go through kind of make you who you are.”
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This article was first published here