05 Jan Deseray and Zayden Hagan
Deseray Hagan had every reason to believe her experience as a new mother would be like anyone else’s. After saving up for months and even waiting an extra week so her own doctor could handle the delivery, the Tompkinsville, Kentucky resident was ready to start her family.
In December of 2015, Deseray welcomed her new baby boy, Zayden. Like many infants, Zayden lost a couple of pounds before leaving the hospital, but doctors weren’t overly concerned. He struggled with feeding, a typical condition for newborns. After trying different kinds of formula, they finally found one Zayden could keep down, and they sent the new family home with instructions on how to care for lactose intolerance.
Within a week, though, Deseray knew things weren’t right. Zayden’s stomach began turning colors, and she rushed him back to the hospital. That’s when Doctors sent him on the first of what would become regular trips throughout his young life – up Interstate 65 to Norton Children’s Hospital in Louisville.
The specialists at Children’s diagnosed Zayden with Hirschprung’s Disease and an associated condition called megacolon. Zayden’s large intestine was too big for a child his age, which left him unable to process or even eat regular food.
“I was just in shock mode,” Deseray said about the moment it became clear Zayden wouldn’t be going home immediately. She hadn’t planned to stay in Louisville for several days, and she realized she had no idea how she’d stay with her child.
“The nurses called over to the Ronald McDonald House,” she recalled. “They told me that we had a room and that they could sit with him while I went and got some rest.”
Deseray didn’t know much about the Ronald McDonald House before her first visit.
“I was nervous at first,” she said, “Then I got over there, and the lady at the desk showed me around the house, around the kitchen, and the room. And I actually got to have a couple of hours of sleep before I went back to the hospital to be with my son.”
“I felt a weight lift off my shoulders. At that time, I hadn’t slept in about a week, but the nurses assured me that he was in good hands and that if anything was to happen, they could call me and I could get right over there.”
That proximity and connection have continued to be a blessing, as Zayden has spent the last five years making visits to Norton Children’s and the Novak Center at the University of Louisville. Some of the trips are for tests and checkups, but others are more serious, as he’s dealt with fevers and even seizures over the years.
Deseray hasn’t been able to work while she’s cared for Zayden, and doesn’t know how she’d manage the trips without being able to stay at the House.
“I’d be making three-hour trips back and forth,” she said. “Just to wash clothes and get other things that we need. That’s 60 dollars in gas every time. It would be hard.”
Ronald McDonald House helps her avoid all that, and helps her spend time with her son. They get to spend some of that time at the Ronald McDonald House together when Zayden sometimes has overnight breaks from treatment.
“He likes going out in the play area. He’ll sit down and read books, color, or play with the dinosaurs. He’s crazy about dinosaurs.”
In between multiple doctor visits during trips that can last up to two weeks, the time at Ronald McDonald House has become a bright spot for Zayden.
“We actually went to Louisville for a doctor’s appointment the other day, and we passed the house,” Deseray recalled. “Zayden was like ‘Mommy, let’s stay here today.’ That’s where he wanted to be.”
Zayden’s treatment continues, and the family still has challenges ahead. Deseray hopes Zayden will eventually be able to eat regular food every day, and “be able to play rough like a little boy should.” She’s hopeful they can get into enough of a routine that she’ll be able to return to work.
In the meantime, she’s grateful for how the Ronald McDonald House has made her family’s journey a little easier, and she wants other families to know about the difference the house and its staff can make.
“It’s a safe place you can go to. If you need help, they’re there to help,” she said. “They’re like family.”