At four days old, Jackson had heart surgery. But the real challenges were yet to come.
Jackson was born with heart complications and 22q-11 deletion syndrome, a condition that can cause nearly 200 health and developmental issues. He spent the first month of his life in the ICU. When his mom and dad finally brought him home from the hospital, he used a feeding tube.
“You almost forget how fragile your child is until you're putting him in the car seat and think, ‘I'm taking this child home and he's been in the ICU his entire life,” says Jackson’s mom Kamille. “He is our first child. He just had heart surgery. And his nutrition was 100% dependent on an NG tube [nasogastric intubation] through his nose.”
During COVID-19, Jackson, shown with mom Kamille, is thriving thanks to telehealth Early Intervention therapy with Northwest Center.
“Immediately upon leaving the hospital, we started doing motor and feeding therapy with our speech-language pathologist Natalie Miller,” says Jackson’s dad Nathan. (Miller, who is also a Hospital-to-Home Clinical Supervisor, remains Jackson’s therapist to this day.)
“It would have been unbelievably difficult to not have that support,” Kamille says. “It’s so overwhelming to be hooking your child up to a machine to be fed. It was really important to have someone dedicated to infant feeding. Natalie had worked with kids with tubes, she'd done swallow studies before. It was not her first rodeo and it was definitely ours.”
“Without that support, I think we would have clogged up our doctor’s phone lines,” Nathan says. “Or we might have pushed Jackson a little bit too hard on trying oral feeding if we hadn't had experts helping us understand his limitations.”
“Your first year feeding and taking care of a child is vital to their wellbeing for the rest of their life,” Kamille says. “The most important part of our day was getting Jackson fed. Natalie would talk to us, give a second opinion of ‘That’s normal or not normal’ or, ‘Yes, you should talk to a doctor about that’ or, ‘Here’s some referrals and resources; let me connect you with this person that might give you some more guidance.’ It was a support system.”
Part of the Family
Jackson, who turns 3 in November, has since reached some major milestones.
“We’ve been with Early Intervention services from the get-go. On top of that, Jackson started going to Northwest Center Kids Early Learning at around 6 months old,” Nathan says. “We knew we couldn’t go to just any daycare because of Jackson’s feeding tube.”
“We wanted to make sure that Jackson had the biggest and most supportive community possible,” says Kamille. “Diversity and inclusion were really important to us because we knew Jackson might have issues that we needed a community to support.”
“The first thing my wife told me about Northwest Center Early Learning was their inclusion policy that every child, no matter what their situation, does every activity with every other child,” Nathan says. “Jackson is part of the family there.”
Nathan and Kamille credit that inclusion for Jackson’s recent progress.
“Jackson has been a 100% oral eater since last September and now has no feeding tube,” Nathan says. “I think inclusion helped push him because it wasn’t just Mom and Dad at mealtimes showing him to eat; it was peers.”
“From the very beginning, we started seeing big changes,” Kamille says. “It was amazing.”
Jackson was born with 22q-11 deletion syndrome. Northwest Center Hospital-to-Home knew just how to help.
Still Connected, Still Thriving
The family is grateful for the consistent support from Early Intervention and Early Learning, especially their long relationship with their speech-language pathologist.
“I consider Natalie a wonderful resource and a close friend,” says Kamille. “I think of her as somebody who I trust with my child's care. Northwest Center was able to facilitate me having support and Nathan having support, and his grandparents having support, by coming into our homes, and that was key to his success.”
Because of COVID-19, in-home visits are suspended for now, but Jackson continues to expand his vocabulary thanks to weekly telehealth therapy. These days, he is practicing saying words and phrases typical for a two-year-old like "I want juice" and "I love you."
“Jackson shows Natalie toys on the screen and they talk about them," says Kamille. ”Natalie is still very supportive of our family. None of that has changed. Northwest Center is still making him a priority,”
Kamille and Nathan want that inclusion to continue as Jackson continues to thrive.
Kamille and Jackson sign “Thank you.”
“I want him to have a normal childhood with normal ups and downs,” says Nathan.
“I want him to be loved by everyone, because he is absolutely worthy of it, as any child is,” says Kamille. “It’s so important to us that Northwest Center’s work continues—for Jackson to have good care and other kids to have an inclusive place to go.”