PORTLAND, Ore. (KOIN) — Wearing the smallest helmet manufactured — with custom cushioning inside — 3-year-old Dylan loves to zoom down the street.
Each day, his mom, Amy Ottaway, celebrates her son and his achievements. Dylan was born with microcephaly, a birth defect where a baby’s head is smaller than expected when compared to babies of the same sex and age.
CDC: Babies with microcephaly often have smaller brains that might not have developed properly
The birth defect has been in the news recently as it’s been linked to the Zika virus, a mosquito-delivered virus that can cause microcephaly in pregnant women.
Microcephaly is rare and, as in Dylan’s case, can also be genetic.
Dylan’s head is about the size of a 3-month-old. His mom said they’re at the point now where they can find newborn sunglasses and hats that “kind of fit.”
“When we first found out (about Dylan’s birth defect) it was devastating,” she told KOIN 6 News. “To be told that your child has something that is potentially life long and it’s most likely going to affect development and mean developmental delays, it’s just hard for any parent to accept.”
For the Ottaway family, the hardest part was not knowing what might happen. “Microcephaly is so uncommon that doctors can’t really give us a road map, and each case is different.”
She said each child’s development is different and the “unknown is definitely the hardest part, and still is — and probably will continue to be the rest of his life.”
Where he is now
Dylan recently underwent an evaluation that determined his big movements — walking, jumping, big muscle groups — are at the level of a 2-year-old. His fine motor skills are about that of an 18-month-old.
He began to walk just before he turned 2, but his most significant delay is in his speech. He uses about a dozen words.
Dylan’s middle finger is stronger than his others, Amy said, and about a week ago he straightened his pointer fingers.
“We both just started screaming and clapping because Dylan put his pointer fingers straight,” she told KOIN 6 News. “We definitely just slow down and take every little phase of development as it comes and celebrate everything.”
His parents said they don’t think about what other 3-year-olds are doing. But they’ve long been public about microcephaly because they are trying to bring more awareness and support overall.
“I absolutely want Portland and our society and our community to know what it’s like to have a child with microcephaly,” Amy said, “but I also want people to understand what it’s like to have a child with special needs.
“More than anything I want people to know it’s OK for kids to develop differently and they’re still kids and just to kind of take the stimgma off of that.”
She said they celebrate their son daily.
“With Dylan, every little thing he does is a miracle to us.”
