Jackson had open-heart surgery when he was four days old. But the real challenges had just begun.
Jackson was born with 22q-11 deletion syndrome and heart complications. He spent the first month of his life in the NICU. When he was cleared to go home after 52 days in the hospital, he relied on a feeding tube for all of his nutrition.
For Jackson’s mom and dad, Kamille Phillips-Dye and Nathan Dye, the prospect of being on their own without 24-hour, one-to-one hospital care was daunting.
“He is our first child,” says Kamille. “He just had heart surgery. He had an NG tube [nasogastric feeding tube] through his nose. You realize how fragile your child is when you’re ready to go home.”
Fortunately, the Dyes had an expert support system ready to ease the transition: Northwest Center Kids Early Intervention.
“Before we even left the hospital, we had an appointment for Northwest Center therapists to check in on us,” says Kamille. “They would come to our house so we didn’t have to go anywhere with a medically complex newborn.”
“We immediately began feeding therapy with our speech-language pathologist Natalie Miller, and motor therapy,” Nathan says.
Experts at the CDC have shown that early intervention is crucial for young children with disabilities to develop physical, cognitive, communication and emotional skills. Northwest Center Kids Early Intervention includes services and supports for children from birth to age 3 who have developmental disabilities or delays. For the Dyes, these services included Hospital-to-Home — specialized support for families of babies coming home from hospital stays. Other NWC Kids Early Intervention services include resource coordination, feeding therapy, nutrition services, education, mental health, speech-language therapy, occupational and physical therapies.
It was obvious that Jackson would benefit from early intervention, but the signs are often more difficult to see. “Parents tend to be referred to early intervention when pediatricians or educators notice that young children aren’t eating, moving, or interacting as they should. But with COVID-19 keeping more children home from well-child visits or child care settings, there’s a real risk that those signs are being missed,” says Lottie Olver, Program Director of Early Intervention at Northwest Center.
“The key to early intervention is, of course, ‘early,’ so caregivers who have a concern about their child’s development should reach out for an assessment as soon as possible,” Olver says. Luckily, taking that step is as simple as making a phone call to the central referral line for families in King County: 800-322-2588.
Jackson’s services concentrated on therapy for oral feeding and speech. His feeding tube came out in the spring, and today he eats 100% of his food orally. Speaking is still a challenge and he is working on communication using a speech-generating device. Jackson and family still have check-ins with Natalie.
Because of COVID-19, in-home visits from Northwest Center are suspended for now, but Jackson continues to expand his vocabulary thanks to weekly virtual therapy. These days, he is practicing saying words and phrases like “I want juice” and “I love you.”
“The therapists are really good at engaging an almost 3-year-old via computer,” Kamille says. “Jackson shows Natalie toys on the screen and they talk about them. She is still very supportive of our family; none of that has changed.”
Olver says Northwest Center plans to continue offering virtual therapy post-pandemic, as one option for families. “We had to unexpectedly pivot to virtual visits and they’ve been really successful,” she says.
With Jackson’s third birthday approaching, it’s almost time for him to graduate from Northwest Center Kids Early Intervention services. Kamille and Nathan say that while Jackson will probably continue with private therapies throughout his life, he’s doing extremely well — and they credit his Early Intervention team for his progress.
“It would have been unbelievably difficult,” Kamille says, “to not have that support.”
Northwest Center has led inclusion efforts since 1965: our founders wrote the first laws guaranteeing all children an education. Our therapy, education, and employment services for people with disabilities maximize potential and create diverse schools and workplaces that benefit everyone.