- Associated Press - Saturday, July 18, 2015

SCIO, Ore. (AP) - Olivia Prescott, 1, had a head shaped like a boat, protruding in the front and the back. A ridge ran through the center of her skull, like a dinosaur, her parents joked. Her temples pinched in toward her face.

Then at 7 to 8 months, Olivia began banging her head — on the floor, the couch, the wall.

For 15 months, Olivia’s pediatrician told her parents, Cherlyn and Oliver Prescott, not to worry about her misshapen head or the head-banging.

They were told it could be due to Olivia’s positioning in the uterus or birth trauma or because Cherlyn’s body, standing at 5-foot-1 and 112 pounds, did not provide the baby enough room to grow in.

And some kids just bang their heads. She’ll grow out of it and her misshapen head, the doctor said.

Then the family switched pediatricians because of a change in their health insurance coverage. By that time, the couple had stopped worrying about Olivia’s head. They went to their first visit with a host of other questions.

But the doctor immediately focused on Olivia’s head, Cherlyn Prescott said.

“His son had it 10 years ago,” she said.

Cherlyn Prescott, who works for Oregon State Police in Salem, is referring to craniosynostosis, which occurs when an infant’s skull sutures close prematurely.

The skull is made of several pieces of bone and the sutures between them typically stay open for most of humans’ lives. The malleable suture lines allow babies to squeeze through the birth canal and accommodate brain growth.

Sometimes, the sutures fuse too early, deforming the skull and causing other issues if it’s not caught early. The condition is often caught because of the odd shape of the head, but if it’s not diagnosed and treated soon, it can lead to headaches, developmental delays and blindness.

RAISING AWARENESS

The type of craniosynostosis Olivia has, sagittal synostosis, is the most common type and occurs in one out of 2,000 live births. There is no known single cause.

The earliest sign of the condition is a misshapen head that does not go away in the first two months after birth, said Dr. Anna Kuang, director of Doernbecher Children’s Hospital’s Craniofacial Disorders Program.

But the specialists rely on primary care doctors being familiar enough with the condition to recognize it and refer them to additional help, Kuang said.

That’s why the Prescotts have taken it upon themselves to raise awareness about craniosynostosis. If their second pediatrician hadn’t had personal experience with the condition, they’re not sure when Olivia’s condition would have been diagnosed.

Cherlyn posted updates and photos about Olivia on her Facebook and participated in online forums. She has received emails from strangers who appreciated the information at a time when their future was full of unknowns after receiving a diagnosis of their own.

While most patients get a diagnosis about 3 months old, many are not detected for a year or two, Kuang said. In addition, some children are not as visually obvious.

When Olivia presented at Doernbecher, she was 17 months old.

‘CRIMPED BRAIN’

Kuang said a person’s head grows fastest during the first year of life, tripling in volume. That’s why it’s best to do the surgery before 12 months, before the child starts suffering symptoms beyond the physical deformity, she said.

Olivia’s head-banging was probably due to headaches caused by the pressure building in her brain. Her speech and language comprehension were also delayed, Prescott said.

“Imagine it was your foot and it’s tripling in size and you keep the same shoe on it,” Kuang said. “You’d get crimped toes. But if you did that with your brain, you get crimped brain.”

Olivia was quickly given a diagnosis of sagittal synostosis, and after a series of tests, including an exam to make sure her eyesight wasn’t in jeopardy, she went in for eight hours of surgery.

Cherlyn Prescott struggled with the image described to her.

“Knowing she was going to be in this room and I wasn’t going to be there for her and she was going to be stretched out unconscious while all these doctors were opening her skull,” she said. “She’s lying there helpless and we couldn’t be with her, and it was just hard.”

Kuang performed the surgery with the assistance of a neurosurgeon May 26.

She took existing pieces of Olivia’s skull and created more room for her brain, similar to how pieces of wood planks are bent to make a wine barrel. The top of her skull looks like the top of a pie or a lattice fence, with small gaps all around. Those gaps will be filled eventually by bone growth, Kuang said.

Olivia came out, cords sticking out of her body, eyes swollen shut and a zigzag scar across her head. The zigzag suture is to allow the hair to grow out in all directions, hiding the scar.

‘CRANIO PRINCESS’

More than a month after the surgery, Olivia is a spunky child who enjoys the family “kitty,” jumping off various objects, and her older siblings. Her language development has skyrocketed since the surgery, which Kuang says is often the case with craniosynostosis patients who had experienced delays before the surgery.

She dons the words “cranio princess” on her purple shirt, which she pairs with a purple tutu.

Olivia will continue to get checkups at Doernbecher to make sure her skull isn’t fusing too quickly again and check for other symptoms.

“You want your kids to be in a school room and you can’t tell the difference between your kid and the other kids,” Kuang said. “That’s our main goal.”

Someday, when Olivia is older, the Prescotts plan to show their daughter all the photos from her journey.

They’d celebrate the girl’s resilience.

And they’d say, “Look what you made it through.”

MORE ABOUT CRANIOSYNOSTOSIS

There are two types of craniosynostosis: syndromic and nonsyndromic.

Nonsyndromic craniosynostosis, which is what Oliva Prescott has, is the most common. There is no known cause for this type.

Syndromic craniosynostosis is rarer and is associated with a group of genetic disorders. Learn more on Doernbecher Children’s Hospital’s website.

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Information from: Statesman Journal, https://www.statesmanjournal.com

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