Going through pregnancy without a partner to lean on can be tough on anyone, but it was made harder when the Camarillo couple received news that their son likely had Down syndrome.
Down syndrome, a genetic condition that occurs when a baby has an extra copy of the 21st chromosome, is fairly common and affects about 6,000 babies in the U.S. each year, according to the National Down Syndrome Society.
October is Down Syndrome Awareness Month.
Overwhelmed by the possibilities of cognitive disabilities and developmental delays—as well as the heart problems that the National Down Syndrome Society says affect about half of all babies born with Down syndrome— Jessica Whitsitt quit her job as an office administrator.
“I just kind of shut down for a while,” she said. “I knew I couldn’t focus because it was just an all-consuming (thing). Everybody goes into a pregnancy wanting a healthy child. You don’t really consider that it’s not an option.”
But when Ethan was born in September 2016, the Whitsitts discovered many of their fears were unfounded.
Ethan hasn’t learned to talk but he’s fairly typical for a child his age, 38-year-old Jessica Whitsitt said, and he doesn’t have any heart problems.
“Anyone that reads this and gets this diagnosis, I wish I could just hug them and be like, ‘You’re going to be OK. This is not the end of the world for you or for your son or daughter,’” she said.
Many with Down syndrome live normal lives, the Whitsitts said. They learn to drive, go to school, get jobs, live on their own and get married.
The real roadblock for people with Down syndrome is the way they’re treated by other people, Brian Whitsitt, 34, said, which is something he didn’t learn until his son was born.
“Children and adults with Down syndrome are limited by other people’s expectations of what they’re capable of,” he said.
So when Brian is not deployed, he and Ethan jump on the trampoline, go to the park and take out the family’s boat. Brian even made some modifications to a too-big tricycle so Ethan can ride it before he grows into it.
When Brian is gone, Jessica and Ethan take trips to Target and Disneyland to get him out and into the world as much as possible.
It’s part of the Whitsitts’ practice of giving Ethan a typical life, though Brian and Jessica will admit not everything is perfect.
Ethan receives care from a variety of healthcare professionals, including speech, occupational and physical therapists, as well as an early interventionist and a feeding specialist.
Jessica Whitsitt said the family is blessed that her husband’s military health insurance covers all of the extra care.
“We just want to make sure we’re doing what we can. . . . It’s really, really helped him,” she said.
Ethan is still young, but the Whitsitts said that if all goes according to plan, their son will be going to school, getting his driver’s license, attending college and living a typical life.
“(Down syndrome) is never going to be an excuse for something. It’s just something to overcome,” Jessica Whitsitt said.
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