- Associated Press - Saturday, May 7, 2016

PORTLAND, Ore. (AP) - The technician was unusually quiet as she traced the ultrasound wand over Amy Ottaway’s big belly.

When Ottaway asked about her baby, due to be delivered in five days, the technician broke the uncomfortable silence. Ottoway would have to give birth that day, she said, and needed to talk to the doctor immediately.

Ottaway knew her amniotic fluid was low and that she’d have to have a C-section. She figured the technician was overreacting. She assumed her baby was fine.

Then came the disturbing news. A doctor at the office told Ottaway that her baby’s head appeared to be abnormally small.

Ottaway phoned her husband, Brian Ottaway, at work. Sobbing, she could barely get the words out.

“Something’s wrong with him,” she said.

They headed to Providence St. Vincent Medical Center in Southwest Portland and checked in. When their turn came, after a 15-hour wait, a room full of doctors, nurses and assistants began the procedure. A team of four neonatal intensive care nurses watched, on standby.

When the doctors pulled Dylan out, he screamed just like other newborns. The crew worked on recording his vitals. He was small, at 5 pounds, 15 ounces, but had 10 fingers and 10 toes. He appeared healthy.

The staff measured the circumference of his head, placing a little tape measure across his crown and around his head above his ears. They checked and double checked the number.

The ultrasound was right: His head was significantly smaller than usual.

Doctors ordered a battery of tests to try to find out why. The lab analyzed his blood and urine and technicians took a magnetic resonance imaging test and an ultrasound of Dylan’s head. No clues turned up.

Ottaway hoped that his head would catch up to the rest of his body and that he would be the perfectly normal child she had expected.

No one mentioned microcephaly.

For the past three years, the condition has consumed Ottaway and her family. On their own, they’ve had to discover what it means to have a child with microcephaly.

The disorder burst into public view this year with international headlines about the Zika virus in Brazil and the birth of several thousand newborns with severely small heads.

But little has been reported about their lives. What are the effects of the condition? Can the children ever take care of themselves? Go to school? Live on their own?

In Ottaway’s life, the mystery of microcephaly is unfolding.

She considers Dylan a blessing, not a curse. She gets angry when she hears doctors on the news talk about babies in Brazil in bleak terms.

“He might not do things when you would expect a typical child to do them, but he will continue to surprise us his whole life,” she said.

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With the spread of the Zika virus, federal Centers for Disease Control and Prevention expects to see more cases of microcephaly in the United States.

The virus is likely to cross the border this summer but judging from outbreaks of other mosquito-borne infections, local transmission could be limited.

Though no one has yet to be infected by a mosquito bite in the United States, the CDC has counted more than 400 travel-related cases in this country, including six in Oregon.

The Zika virus is spread by mosquitoes that thrive in warm climates, including the southern United States. They don’t exist in the Northwest. Men can pass on the virus through semen.

In adults, the virus usually causes mild symptoms, if any. Public health officials only became concerned about it last year, with the birth of about 3,000 babies born in Brazil with severely small heads. The CDC recently concluded that the Zika virus was to blame.

Microcephaly is a broad condition based on having a smaller-than-usual head size. Anyone with a head more than two standard deviations smaller than the mean has microcephaly.

Their heads grow with age but their brains don’t, staying about the same size as when they were born.

Historically, about six in 10,000 babies born in the United States have microcephaly, according to the CDC. It can be due to a problem during pregnancy such as a viral infection, malnutrition, exposure to toxic substances such as alcohol or interruption of the blood supply to the fetus. It can also be genetic. Children with a mild form of the condition often lead normal lives.

The CDC doesn’t have reliable data on microcephaly because diagnoses can vary and it isn’t as clear-cut as a cleft palate or many other birth defects. But as a general rule, the smaller the brain at birth, the greater the chance for developmental delays. Children with Down syndrome typically have heads that are two to three standard deviations below the mean.

Dylan Ottaway’s was six standard deviations under the mean.

When he was born on May 31, 2013, two years before the Zika virus hit Brazil, few people knew about microcephaly.

Amy, then 32, and husband Brian, 33, had no relatives, friends or associates with children like Dylan. There were no support groups, no stories in the news.

Amy, a stay-at-home mom, felt alone.

“I wanted somebody to tell me it would be OK,” she said, “to tell me their story of how their family made it through the hard parts.”

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Right after birth, Dylan latched onto Amy’s breast to nurse. He cried and slept. His early months were much like that of the couple’s first child, Jack, who had just turned 2.

Though his head was visibly smaller than other infants, Dylan was strong and alert. He made eye contact and had good head control. Ottaway hoped he would overcome any disability.

At six weeks, the Ottaways took Dylan to a geneticist at Legacy Emanuel Medical Center. He measured Dylan’s head, tested his reflexes and gave a diagnosis: primary autosomal recessive microcephaly.

The cause was genetic, the specialist said, but didn’t have any details. He said Dylan could experience severe developmental delays. He might have seizures. He could have trouble with movement. His language ability might cap out at a young age. It was too early to tell.

That news hit the couple like a bombshell.

“Over the next few months, there were a lot of tears,” she said.

It took more than eight months to see the country’s top microcephaly expert, Dr. William Dobyns at Seattle Children’s Hospital.

Cases like Dylan’s are relatively rare, Dobyns said. No one knows how many children are born in the United States each year with severe microcephaly. That data isn’t collected.

Dylan has another birth defect that involves abnormally small folds in the cerebral cortex, the area that houses neurons that allow people to feel, think and communicate.

That defect is associated with a severe intellectual deficit, Dobyns said. It’s also linked to cerebral palsy and epilepsy.

A genetic test revealed that Brian and Amy Ottaway carried a recessive gene, one of about 50 associated with microcephaly.

The babies in Brazil, with heads smaller than Dylan’s, are worse off, Dobyns said.

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Dylan flashed an open-mouth grin as he passed in front of the mirror, a therapist pulling him around the room on a scooter board. Each time he saw his image he gurgled with delight, causing Amy to laugh.

“I laugh all day when I’m with Dylan,” she said.

Dylan has a mop of brown hair, blue eyes and fluttering eyelashes. The top of his head, which appears smaller than normal, accents his pudgy cheeks.

At 2 months, he started physical therapy, which initially consisted of stretches and massages.

He rolled over at 4 months - just like their son Jack — but didn’t crawl until 14 months, an age when many children are walking. Five days before his second birthday, Dylan took his first steps alone, walking across the room.

About three months later, he threw a temper tantrum in a Fred Meyer parking lot when his mother wouldn’t let him climb into a child’s shopping car.

Ottaway was thrilled.

“I was so excited to see he had an opinion,” she said. “Before that he had just gone with the flow.”

He has learned some words, including “cheese” and “wow.” He also knows a few hand signs but struggles with motor skills. The link between his brain and muscles is weak.

To help him reach his full capacity, he has weekly therapy sessions fashioned like play. In a recent occupational therapy class, he worked on guiding a fork to his mouth. When he tired of that, the therapist switched to finger crayons that you wear. They’re easier to manipulate and used as a first step toward writing. The therapist tried to get Dylan to draw a straight line.

“Zoom,” she said, tracing a quick line. “Zoom, zoom.”

He furrowed his brow. He had trouble manipulating the crayons and ended up flinging them on the floor.

His physical therapy class is focused on gross motor skills like climbing a padded ladder on his knees. His speech therapist is trying to get him to associate objects, like farm animals, with their names. He also has a weekly music class, which he loves, and a special education session with other toddlers.

He’s about a year behind his peers in his gross motor skills, about 18 months behind in fine motor movement and about two years behind in speech.

Still, he’s doing better than many children with the same genetic mutation, said Dr. Joseph Pinter, Dylan’s pediatric neurologist at Doernbecher Children’s Hospital.

“That doesn’t mean he will talk in full sentences,” Pinter said. “And it doesn’t tell you how he will do in school.”

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Amy Ottaway cried for weeks as she wrestled with the pain of not seeing Dylan enjoy a typical childhood. She measured his head every day for a year, hoping it would grow. When it gained even a half a centimeter, she celebrated.

As part of her grieving and acceptance process, she turned to the internet and started writing, first with a blog, then on Facebook.

Her first entry, on July 22, 2013, read:

“Dylan, our sweet baby boy, was born on May 31st at 5:30 a.m.,” she began. “He was born perfect. He was born weighing 5 pounds, 15 oz. and 19 inches long. He was beautiful. He was born strong and healthy and full of life.

And Dylan was born with microcephaly.”

The blog was raw with emotion. She shared doctor’s visits and therapy sessions. She vented her anger at hurtful comments from strangers and expressed frustration at being overwhelmed. How did other mothers with young children manage, she asked.

She poured her sadness, fear and anguish into the blog. And she recounted Dylan’s progress. She noted when he rolled over and stood up in his crib, when he learned to use a straw and zip around on his walker. She delighted when he banged a drum in music class.

Strangers began to comment. Mothers who had children with microcephaly reached out. Pretty soon she wasn’t alone.

Brian Ottaway’s journey has been private and perhaps more difficult, partly because he has less time with Dylan.

The family’s breadwinner, he’s a project manager at Intel. He interned at the company while getting his bachelor’s degree in industrial and manufacturing engineering at Oregon State University and has been there 16 years since, including when he was getting his master’s degree in business administration.

On average, he works 45 hours a week. That leaves only the evenings and weekends with his family.

With time, he, too, has dialed back dreams of seeing his youngest son participate in college sports, attending his wedding or rejoicing over his career. But acceptance has been slow.

“The whole thing is difficult,” he said. “Everything you envision looking forward is not going to happen.”

Their lives have changed. Their focus is different and their responsibilities greater. Brian Ottaway must earn a good living. He can’t lose health coverage. He has to sock money away for Dylan to ensure his care for the rest of his life.

As the older brother, Jack will have his own burden to shoulder one day when his parents die.

Jack is a sweet, intelligent child who’s protective and proud of his brother. When a stranger compliments Dylan’s cuteness, Jack breaks into a shy smile.

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The Ottaways don’t know what the future will bring. So far, Dylan’s life hasn’t been as dire as the doctors had expected. He can see, sit up and walk. He hasn’t had a single seizure and he’s learning to feed himself.

When he discovers something new, he repeats it, over and over, as if to imprint it in his brain. He’s generally a happy child who is drawn to people. Playing peek-a-boo is one of his favorite games.

Learning to communicate could be his biggest hurdle. Lately, he’s been throwing fits, frustrated that no one understands what he wants.

He definitely has a mind of his own.

Amy Ottaway has learned to accept that he will advance at his own pace.

“There have been so many positive joyful experiences that we have gone through in the first three years of raising Dylan,” Ottaway said. “I can’t imagine my life any different.”

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Information from: The Oregonian, http://www.oregonlive.com

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