By Harriet Whitehead
A six-year-old boy who had amazed doctors when he was born 13 weeks prematurely is defying the odds again after suffering a life-changing stroke.
William Ryder lost the feeling in his right side, is unable to walk unaided and has heightened senses which leave him struggling to cope with certain sounds after collapsing in October last year.
After being born weighing just 1lb 3oz the youngster battles a number of health issues including chronic lung disease, global development delay and epilepsy – which at its worst caused him to have 200 seizures a day.
But doting parents full-time mum Michelle Ryder, 41, and policeman Paul Ryder, 39, said William, who was born after seven rounds of IVF, had been doing well and are stumped as to why the stroke happened.
Michelle from Barnsley, South Yorkshire, said: “The progress he’s made has been nothing short of phenomenal and we could not be more proud of him. He’s a little fighter and has been fighting since the day he was born.
“After the stroke the prognosis was not good but we call him ‘super William’. He’s got where he is through determination and willpower. Everyone is amazed at how well he’s doing.
“In hindsight there may have been signs there was something wrong – like he was dropping his head and leaning forward when he was walking but we thought he might have been imitating other children.
“There was no evidence of a fall or whether it had built up over time.
“That day I got a call from his school saying he was being clingy and crying.
“We thought it might have been high ketones (low blood glucose levels) so we gave him a sugar drink but his numbers were out of whack so we took him straight to Sheffield Children’s Hospital.
“Within half an hour the crash team were there and there were consultants talking about brain surgery.
“I said to Paul ‘this is really serious, he might not make this’, we were just in shock.
“He had a massive bleed on the brain which crushed part of his brain into the top of his spine and led to the stroke.
“Doctors thought he would be left brain damaged. They said they didn’t think he was going to be able to breath by himself.
“We kept saying to him ‘William keep breathing’ and within 48 hours he had come of the ventilator. He’s a fighter.
“We read to him and we sang to him. We kept telling him just to keep breathing and we will do everything else for him.
“For that first week afterwards he could barely open his eyes.”
After he was born William was diagnosed with a condition called ventriculomegaly meaning he had excess fluid in the ventricles of the brain.
For years this hadn’t caused him any problems but for some reason the fluid started to build up and developed into acute hydrocephalus.
While in hospital William was fitted with a shunt to help drain the fluid and, after also fighting off a bout of pneumonia, to his parents’ relief was allowed home after 99 days.
The family is now focusing on William’s recovery with rehab helping him with his mobility and communication.
Former nanny Michelle, who cares for her son full time, said: “Physically he can walk a little bit now – he can do a couple of steps but he’s very wobbly and his ankles are twisted.
“You can see physically there’s something wrong and that his feet are turned inwards.
“It’s like he’s a toddler learning to walk again. He crawls a lot more which he didn’t do before.
“He used to be able to go up and down the stairs but he can’t do that anymore. He can crawl up but not down.
“We have noticed a lot of changes. He’s very ‘sensory’.Before he loved going out for walks and to the supermarket but he can’t anymore. I think it’s the wind – the sound and feel is too much for him.
“There’s so much going on in the supermarket – the sounds and colours – it’s all just too much.
“He has always been able to see out of both of his eyes but now he has problems seeing out of the right eye. Structurally they are fine but his brain can’t process it properly.
“But some things have improved – like his attention span is better now.
“Because he’s non-verbal he’s not able to let us know what’s going on. I think he gets frustrated. He’s having to relearn his skills again. It’s like his brain is having to re-map and we’re having to figure him out again.
“It’s a long journey. Everything he does is very tiring – even if he has a little walk he will need to lie down and recover.
“We are having to think about things and be more aware without pushing him too hard.
“We don’t know what the long-term impact is – we just have to wait and see. But he’s done really well. Everybody is amazed at how well he’s doing.
“Reading his discharge reports – most people don’t make it or if they do they are left profoundly disabled.
“At the moment we want to make his life the best it can be. He’s a strong boy and has been fighting since the day he was born.”
Recalling the moment William was born at 27 weeks by c-section, Michelle said she expected to hold him once before he died.
Mum-of-one Michelle said: “I had a very difficult pregnancy because I got pre-eclampsia and was in
hospital for a lot of it. They thought William had Edwards Syndrome and we were advised to terminate the pregnancy.
“We said that wasn’t an option for us. I didn’t believe in termination because of what we had been through – we thought if he wanted to hang in there he would.
“We knew he was going to come early because of the pre-eclampsia but I tried to hide it because I thought the longer the pregnancy lasts the more likely it is he’ll survive.
“Doctors said if they didn’t get him out we would both have died. They prepared us for holding the baby and said he was probably not going to live. They thought he had had a stroke in the womb.
“I remember hearing him squeak like a little balloon, he was so small. I was expecting them to pass me a baby and he would die in my arms.”
William was rushed to the neo-natal unit and Michelle didn’t see him until he was two days old.
Michelle said: “I looked at him and burst into tears. I was thinking ‘how is he alive?’ He was so small. His skin was transparent – he looked like an old man.
“I was scared to touch him. I think I held him on day four and then really felt that bond. I just remember crying and shaking, I held him to my chest and it was tingling. I looked at my husband and said ‘he’s alive’.”
For the first two weeks William seemed to be doing okay but then he started to deteriorate and was put back on a ventilator.
Michelle said: “We could see him deteriorating and the doctors told us death wasn’t imminent but it was going to happen.
“It was heartbreaking hearing that but we could see it for ourselves – he was just getting worse.”
William spent the first nine months of his life in hospital – the first four in St George’s Hospital in London before being transferred to Doncaster Royal Infirmary.
And when he was finally allowed home he was rushed back in 24 hours later after his oxygen levels dropped.
Over his short life the youngster, who has to take eight medicines a day, has been back and forth to hospital mainly because of issues with his breathing.
He spent his first birthday in the Freeman Hospital in Newcastle after being put on a special machine for babies with lung failure that pumps oxygen back into their blood.
Because of his prematurity William never learned to swallow and has severe reflux which means he has to be fed via a tube.
His epilepsy, which is now being controlled using a ketogenic diet, medication and a nerve stimulator, also means he has to wear a helmet because of the risk he will injure himself during a drop seizure.
Michelle, who hopes to retrain as a teacher in the future, said despite what the schoolboy has been through he’s always smiling.
Michelle said: “We’ve had strangers in the street come up and compliment his smile, even when he’s poorly he’s smiling. He’s quite an easy-going boy like his dad.
“He loves it when we sing to him. It’s the simple things that keep him happy like he loves splashing and swimming.”
Now the family’s focus is on raising funds to help adapt their home and provide specialist equipment including a lift, hoists and a wet room to help William move around the home and live as independently as possible.
There are over 400 childhood strokes a year in the UK.
A stroke happens when the blood supply to part of the brain is cut off.
There are two main types of stroke:
Ischaemic strokes are caused by a blockage in the blood supply to the brain.
Haemorrhagic strokes occur when blood leaks from a burst blood vessel into the brain.
Strokes in children from are often associated with existing conditions, most commonly congenital heart disease and sickle cell disease (SCD).
Other risk factors are infectious diseases, trauma to the head or neck, vascular problems and blood disorders.
In about 10 per cent of childhood stroke cases the cause is unknown.