Dad’s heartbreak as toddler son wakes up paralysed after suffering spine injury in his sleep

A father has told of his heartbreak after his toddler son became paralysed as he was learning to walk.

Charlie Fielding, from Angmering, West Sussex, woke up in October last year unable to move.

It is thought that the blood vessels in his back had swollen and put pressure on his spine resulting in an injury that left him paralysed from the waist down.

Charlie, now two, had been taking his first steps before tragedy struck and was learning to toddle across the living room clinging to his father and mother Becky’s hands.

His father Jamie, an environmental manager, said: “It is heartbreaking. It is hard. You don’t expect to be buying a wheelchair for your two-year-old son.

“As a dad, you imagine having a kickaround in the park on a Sunday. It’s difficult to talk about these sorts of things.
“We are still hopeful, though.

“Doctors had told us that he wouldn’t regain any bladder function, but now he can wee by himself. He can sort of commando crawl at the minute. He is getting stronger every day.”
Charlie and his twin sister Poppy were born premature at 30 weeks, at Worthing hospital in March 2015.

Although Poppy was able to go home after six weeks, Charlie had to stay in hospital for two weeks longer as he struggled to feed.
Despite being discharged with a feeding tube, Jamie, 37, and receptionist Becky, 36, were delighted to have him home, so they could settle into family life with their twins and their older daughter Lola, now four.

For the first year of his life, Charlie struggled with respiratory problems and was in and out of hospital.

But just after his first birthday, they felt he was finally improving.
Jamie explained: “He hadn’t had any respiratory problems for eight months and was starting to make positive progress.

“He managed to stay out of hospital and was starting to crawl and move around.

“Through the spring and summer, we could see he was starting to develop. He wasn’t quite as on par with Poppy, but he was getting there.”

In October 2016, at 18 months old, the couple were delighted when Charlie seemed to finally be getting to his feet.

He moved from crawling across the floor to toddling around the room, whilst clutching his mum or dad’s hands.

Jamie said: “He was getting the hang of it. We were confident he would be running around soon.”
But on October 17, Charlie woke up in distress and his parents realised there was something seriously wrong.

“We couldn’t put him on the ground. Normally he would crawl around, but he was very floppy and limp on the floor. He wasn’t willing to bear weight on his legs. It was like he couldn’t do it rather than that he didn’t want to,” Jamie said.

They took him to Worthing Hospital, but he gradually deteriorated, as doctors spent three days trying to find a cause.

By the time he was transferred to Southampton General Hospital , after he was hardly able to move.

Doctors there diagnosed him with arteriovenous malformation – a misconnection of the blood vessels, that causes them to swell.

The swelling had put pressure on his spinal cord, causing an irreversible spinal cord injury.
Jamie said: “He was born with a misconnection of blood vessels which meant that the veins were taking high pressure blood and it was causing them to swirl around in his spine. This meant that the vessels started to swell.

“It was getting bigger and bigger and it was compressing his spinal cord. It can take a lot of pressure over time but once it deteriorates, it happens very quickly.

“We hadn’t seen any outward signs that there was anything wrong until the point where there was this rapid deterioration, over these few days.

Following the diagnosis, the family were transferred for more specialised treatment at Great Ormond Street Hospital, London.
Doctors there discovered that Charlie has a very rare mutation of the Rasa1 gene that meant he susceptible to misconnections in his blood vessels.

Charlie had surgery to help the blood flow in his body – but unfortunately, he remains paralysed.

Jamie explained: “If the blood vessels had kept swelling and burst, he would have had a catastrophic bleed, that couldn’t be stopped.”

Discharged from hospital after four weeks, he continued with NHS-funded physiotherapy at a local facility, which has now finished.
Charlie’s parents are now desperately fundraising to pay for more private physio and to help buy equipment that can help him.
“It wasn’t expected that the physio will lead to him recovering. It is more about keeping his body in good condition and keeping his spine and hips aligned. If, in the future, there may be more treatment available, we don’t want him to deteriorate in the meantime,” Jamie said. “He needs to have the best chance possible.

“While his twin sister makes significant leaps in her development, we don’t want Charlie to get frustrated either.

“We want to get some things like a hand powered trike, to give him the same opportunities that his siblings have.”