A toddler who was on the verge of walking on his own became paralysed without warning, his heartbroken father has revealed.
Charlie Fielding, now two, from Angmering, West Sussex, had just began getting to grips with moving around unaided in October.
His parents, Jamie, 37, and Becky, 36, were preparing themselves for him to take his first steps at any moment.
But then on October 17, he woke up in pain and unable to move. He was rushed to hospital when his body went floppy and limp.
Doctors diagnosed him with arteriovenous malformation – a misconnection of the blood vessels that causes them to swell.
This swelling had put pressure on his spinal cord, causing irreversible damage and leaving him paralysed from the waist down.
Charlie has since had surgery to try and improve his condition, but he remains in a wheelchair for the foreseeable future.
Charlie Fielding, now two, from Angmering, West Sussex, had just began getting to grips with moving around unaided in October before he was left paralysed (pictured last month)
‘He was getting the hang of it’
Mr Fielding, an environmental manager, said: ‘He was getting the hang of it. We were confident he would be running around soon.
‘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.
-
Your smoking could give pets cancer, owners are told: Vet…
Babies sleep LESS if they’re in your room: Infants aged six…
How a double dose of prostate drugs boosts survival rates by…
Blood test for ALL cancers that can spot tumours ten years…
‘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 both born premature at 30 weeks at Worthing Hospital in March 2015.
Although his sister was able to go home after six weeks, Charlie had to stay in hospital for two weeks longer as he struggled to feed.
On October 17, he woke up in pain and unable to move. He was rushed to hospital when his body went floppy and limp (pictured last month)
Despite being discharged with a feeding tube, his parents were glad to have him home so they could settle into family life with 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.
Mr Fielding said: ‘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.
His parents, Jamie, 37, and Becky, 36 (pictured out for dinner in September 2015), were getting prepared for him to take his first steps at any moment
Charlie, who is now paralysed from the waist down, has since had surgery to try and improve his condition, but he remains in a wheelchair (pictured in March)
Charlie’s father, Jamie Fielding, an environmental manager, said: ‘He was getting the hang of it. We were confident he would be running around soon’ (pictured at Great Ormond Street Hospital in October where he received specialist treatment)
WHAT ARE AVM’S?
An arteriovenous malformation (AVM) is a specific term used to describe a tangle of blood vessels with abnormal connections between arteries and veins.
High pressure arteries containing fast flowing blood are directly connected to low pressure veins, which normally only contain slow flowing blood.
This means that blood from the arteries drains directly into the veins – without stopping to supply the normal tissues in that part of the body with essential substances like oxygen and nutrition.
Over time this can lead to the normal tissues becoming painful or fragile.
It also means that the AVM gets progressively larger over time as the amount of blood flowing through it increases, and it can cause problems due to its size.
Finally, it may also mean that the heart has to work harder to keep up with the extra blood flow.
Some doctors describe an AVM as ‘a ring road that bypasses the high street of a town’.
Traffic (or blood) will use the bypass rather than the high street which suffers as a result.
AVMs are thought to affect approximately 1.4 in every 100,000 people.
Source: Great Ormond Street Hospital
He moved from crawling across the floor to toddling around the room, while clutching his mum or dad’s hands.
But on October 17, Charlie woke up in distress and his parents realised there was something seriously wrong.
Crawling difficulties
Mr Fielding added: ‘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.’
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, he was hardly able to move.
Doctors there diagnosed him with arteriovenous malformation.
Mr Fielding added: ‘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.’
Charlie and his twin sister Poppy were both born premature at 30 weeks at Worthing Hospital in March 2015 (pictured together in the special care unit at Worthing Hospital)
Doctors at Southampton General Hospital diagnosed him with arteriovenous malformation – a misconnection of the blood vessels, that causes them to swell (pictured at Great Ormond Street Hospital receiving treatment)
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 means he is susceptible to misconnections in his blood vessels.
He had surgery to help the blood flow in his body – but unfortunately, he remains paralysed.
Experts warned that if the blood vessels had kept swelling and burst, he may 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.
Desperate for private treatment
Charlie’s parents are now desperately fundraising to pay for more private physio and to help buy equipment that can help him.
Mr Fielding said: ‘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. 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.’
To donate to Charlie’s fund, visit here.
Mr Fielding, pictured with the couple’s other child, Lola, four, added: ‘It is heartbreaking. It is hard. You don’t expect to be buying a wheelchair for your two-year-old son’
Doctors warned that if the blood vessels had kept swelling and burst, he may have had a catastrophic bleed that couldn’t be stopped (Charlie, Poppy and Lola are pictured on a family holiday in Menorca last September)