HUDSONVILLE, Mich. — Despite going through tremendous health struggles, a family continues to stay resilient as their 2-year-old toddler undergoes intensive surgery to fix his omphalocele.
Lawston Everett is spunky and silly just like most toddlers, but unlike most toddlers he was born with a rare birth defect.
When Katie Everett went in for her scheduled ultrasound while pregnant, she got news no expecting parent wants to hear; there was a complication.
"They do the ultrasound the doctor comes back in and she says, 'there's a baby in there', but they told us that he maybe had something called an omphalocele," Katie said.
Lawston's omphalocele caused him to have some developmental and physical issues, including a severe case of scoliosis.
“We really want to control the scoliosis and not let it progress," Mary Free Bed pediatric orthotist Connie Summers said. “It was a year and a half journey to where we are today with making two different braces for him and dropping his curve down almost 30 degrees, holding that omphalocele as he grew and not letting it get any larger."
Lawston also relies on a ventilator to breathe, a feeding tube to eat and can only communicate with sign language due to the trach tube in his neck.
"His trach and vent are...breathing for him. So he's been dependent," Katie said.
The Everett's built Lawston a cart to put his vent on so he can be mobile. But his round-the-clock nurses have to pull it around for him or sometimes even Lawston himself. If he accidentally gets unplugged, it's a race against the clock to get it back in so he can continue to breathe.
"Sometimes it does break my heart that like that is what people see first," Katie said about Lawston's cart and breathing tube. "I mean they are so focused on that. I just want people to see him for who he is - a spunky little toddler who loves to play."
But nothing gets Lawston or his family down.
"I think just having that positive attitude has made a world of difference," Summers said.
Lawston's doctors at Helen DeVos Children's Hospital and Mary Free Bed Rehabilitation Hospital have been working together to keep his organs safe and fix his scoliosis at the same time.
On his second birthday earlier this month, Lawston went in for his biggest surgery yet. He got all his organs back inside his belly - a lengthy and complicated procedure.
"He'll always have that scar and I hope that can just be a story that he remembers being told, but that he doesn't quite remember," Katie said.
