Boy, 5, Finally Gets to Go Home for the First Time After Living His Entire Life in the Hospital
When Gary and Sarah Chatham welcomed their son Theo, they never expected it would take years to bring him home from the hospital.The Scotland-based couple’s 5-year-old son contracted necrotizing enterocolitis (NEC), a serious gastrointestinal problem, at just three weeks old. Following the diagnosis, his illness led to several other health conditions.
For five years, Theo only knew the hospital as his home. He moved from hospital to hospital throughout Scotland, depending on which facility could give him the care he needed as he struggled with epilepsy, brain damage and cerebral visual impairment.
Sarah and Gary Chatham with their son Theo.Sarah and Gary Chatham
Before Theo was finally able to be discharged from Glasgow’s Royal Hospital for Children on June 23, the 5-year-old had already undergone more than 200 procedures — 48 of which were life-saving.
“On his third ever operation, they gave us a talk that we might have to sign his life away,” his mom Sarah recalls to PEOPLE. “I refused. I said, ‘I’m not God, and neither are you, so please put my son through that operation.’”
When Theo’s parents were finally told earlier this year that he could be discharged from the hospital for the first time, they were in disbelief.
Theo Chatham as a baby in the hospital.Sarah and Gary Chatham
Our new app is here! Free, fun and full of exclusives. Scan to download now!
“We played it day by day and every time we got some sort of, ‘Well, there may be a day in the future we’ll get out,’ something always went wrong,” says Gary. “There never seemed to be any way, and if there was, it was always a train coming towards us because it was something that we realized would never happen.”
“Even on the days when they said we could go home, something would happen, or we needed to go for another surgery… everything was always up in the air,” he continues.
“Finally when we were told, ‘Pack your bags. It’s time to go, we were like, ‘Huh?’ That was his first ever discharge in 1,909 days.”
Theo Chatham as a baby at the hospital.Sarah and Gary Chatham
While this was Theo’s first official time coming home, he has been allowed occasional day passes out from the hospital though would always have to return to his room at night.
“There was never a day when he wasn’t in the hospital, and he would have to be on IV drugs,” says Sarah.
At the beginning of Theo’s journey, the couple recalls being told that they might only have to be in the hospital for a couple of months while they got things settled.
Related Stories
Mom Asked Neighbors to Let Her Son with Autism Trick-or-Treat for His Birthday. Their Response Left Her Speechless (Exclusive)
Micropreemie, Who Was Given a 10% Chance of Survival at Birth, Goes Home After More Than One Year in the NICU (Exclusive)
“Because it’s a gastro patient, it’s never straightforward. You can’t just tell what part of the intestine works and what part doesn’t because we don’t know what each part really does,” says Sarah. “So over time it’s just constant experimentation on him, to be honest.”
Sarah and Gary’s lives were turned upside down during Theo’s years-long hospitalization.
“We were chefs, and that’s when we met and started catering,” says Gary of his and his wife Sarah’s previous careers. “Basically we became unemployable. To phone your employer and say, ‘I’ll not be in today. Theo’s going for surgery, and I have to take three months off.’ It’s not fair in the business you’re working for.”
“Luckily we had good, understanding bosses that knew the severity of it, but we didn’t expect [this] to be five years later,” he adds.
Theo Chatham at the hospital.Sarah and Gary Chatham
Never miss a story — sign up for PEOPLE’s free daily newsletter to stay up-to-date on the best of what PEOPLE has to offer, from celebrity news to compelling human interest stories.
While Theo lived in the hospital, Sarah and Gary lived on the hospital grounds at the Ronald McDonald House — becoming one of the longest residents to ever stay at the home.
“One of us stayed at the hospital, one stayed at Ronald McDonald, and then we swapped the next day just to give each other a break. But we basically stayed in the hospital with him,” Gary shares.
Theo Chatham at the hospital.Sarah and Gary Chatham
Not only is it a major change for Theo to be home, but Sarah and Gary are appreciating the little things about being back at their own house, too.
“People say, ‘You’re getting back your life, getting back to normal.’ And it’s like, we’ve never experienced this. This is not getting back to normal. This is starting fresh,” says Gary.
Sarah and Gary Chatham with their son Theo.Sarah and Gary Chatham
“Me and [Sarah] will share the bed with each other for the first time in God knows how long. We’ve never had the chance to cuddle,” he adds.
During Theo’s time in the hospital, it was difficult to make plans for him to socialize and learn new skills.
“There were times when you couldn’t plan anything because with Theo, we had to live hour by hour, minute by minute sometimes because his body would need a recovery period due to the operations,” explains Sarah.
Occasionally, if Theo was well enough, hospital staff would come up to paint with him in his room or read him stories. A physio team would also come to help him try to stand and walk, as Theo never got the chance to learn due to his operations.
“Even though he’s 5, we need to take baby steps,” Sarah says.
Gary Chatham and his son Theo at home.Sarah and Gary Chatham
Now that Theo is home, he will remain under close medical supervision from both a care team and his parents, who underwent months of medical training to prepare for this moment.
While the family will continue to live day by day — as there is a “high chance every day that Theo could be readmitted” should he get sick — his parents are excited to have him at home and part of their tight-knit community.
This month, Theo will be starting at a specialty school, where he will receive individual care from teachers and therapists.
“The school is amazing,” says Gary. “He’s going to thrive.”
