Jago Worrall before the accident. He was found floating face down in a pond by his mother.
Hello Friends!
Sound asleep in bed, his cheeks pink and his hair tousled, little Jago Worrall is the picture of childish health and contentment.
‘When I see him like this, I can almost pretend nothing has happened,’ says his mother Lyn.
But when Jago wakes up, the illusion is impossible to sustain.
He is likely to have a seizure, or cry uncontrollably from the discomfort of the tube that delivers nourishment into his stomach.
He can’t walk or talk.
And although Lyn, 38, a luxury goods sales and marketing consultant, thinks her son recognises her, she cannot be sure.
Jago, who turned two last Saturday, is the victim of a near-drowning that has left him with a serious brain injury. One sunny Sunday in March this year, while his parents were preparing lunch, he wandered away from the nanny who was minding him and fell into the garden pond.
‘The irony is that we considered ourselves very careful, hands-on parents,’ says Jago’s father Barney, 44, commercial director of a large asphalt firm.
‘Our children are the centre of our lives: everything was planned with them in mind.’
The Worralls have two other sons — Riley, eight, and Ferdie, four — but had always been particularly cautious when it came to Jago.
‘He was a warrior,’ says Lyn.
‘He was walking at 11 months, he was running, letting go of my hand, trying to run out of the front door. He was always desperate to get to the next stage.
'It was heart-stoppingly scary sometimes. I’d come in and find he’d climbed on to the kitchen table.
'His brothers were never like that.’
When they moved to live with Barney’s mother in her large home in Welton, Northants — in order, ironically, to give their sons a freer, better life — they were alert to the potential risks of the 13 ft-wide garden pond.‘We would have drained the pond but the children wanted to keep the ducks,’ Lyn explains.
Barney and Lyn Worrell have two other sons - Riley, eight, and Ferdie, four - but had always been particularly cautious when it came to Jago. 'He was a warrior,' said Lyn.
‘One of Jago’s first words was “Quack-quack”.’
She smiles ruefully.
‘The workmen were booked to come the following week to fence it in before the weather improved and the children wanted to play outside.’
But March 11 was an unseasonably beautiful day. Friends had come to stay with their children, bringing their nanny with them.
She took Jago and Ferdie to play on the trampoline while the parents were making brunch. Riley was away, staying with his grandparents.
Lyn recalls: ‘They all came in to eat, and I said, “Where’s Jago?” The nanny said: “Oh, haven’t you got him?” — and that was when I just ran.’
When she reached the pond, which lies hidden behind a clump of trees, she saw him floating face down in the water and plunged straight in.
‘He was blue and floppy and he wasn’t breathing,’ she says.
‘In my mind, he had gone.’
Lyn had taken a first-aid course when Jago was four months old, but faced with trying to resuscitate her son, she found herself unable to put her skills into practice.
‘I couldn’t do it. He wasn’t alive and that was all I could see,’ she says.
‘I couldn’t even walk. I crawled on hands and knees back to the house.
'The noises that were coming from me were like when I gave birth.’
Barney, meanwhile, was trying to give his son artificial respiration, but his only knowledge came from watching TV dramas. ‘I tried and tried and tried,’ he says sadly.
Within ten minutes the police arrived and began desperately trying to revive the toddler in the front hall.
After 20 minutes, the paramedics arrived and started massaging Jago’s heart, putting a tube into his lungs to drain away the water. Unable to bear the sight, his parents retreated to the sitting room to grieve for the son they thought was dead.
'No matter how frightening this is, I still get to hold him and see him, and I hope Jago can get some quality of life back,' said Lyn.
And then, miraculously, 65 minutes after Lyn had first found Jago in the water, one of the paramedics shouted: ‘I have a pulse!’
Barney called out to his wife: ‘It’s not over.’
Even now, Barney is in tears at the memory.
‘I couldn’t believe it,’ he says.
But Jago’s struggles were only just beginning. He was transferred by air ambulance to Coventry Hospital, where his heart stopped for a few minutes once more — but again he was resuscitated.
He was then moved to the intensive care unit at University Hospital, North Staffordshire.
‘Eventually,’ says Lyn, ‘the doctor came in and told us: “There are several things that might happen. 'First, he won’t survive the night. Or he will survive, but with severe brain damage.” That hadn’t even crossed my mind.’
Later, they were told Jago’s chances of survival were just one per cent.
Do they ever feel it might have been better if Jago had slipped quietly away?
‘No,’ says Lyn firmly. ‘I remember how frightening that was — the idea of him being put into the ground.
'No matter how frightening this is, I still get to hold him and see him, and I hope Jago can get some quality of life back.’In many respects, his progress since then has been astonishing. He began breathing on his own after just a few days.
He is now able to swallow pureed food from a spoon (although he can’t consume enough to keep himself healthy, hence the feeding tube). His eyesight seems to be unimpaired, he responds to music and he can sit up and lift his head. He even appears to be vocalising.
‘He is babbling at night,’ says Lyn. ‘And the other day when I kissed him goodbye, I think he said “Mama”. It’s hard to know if he means it, but the nurse had tears in her eyes.’
But despite such milestones, Jago’s prognosis is frustratingly uncertain.
Every year, thousands of children suffer head injuries. While most make a full recovery, others, such as Jago, are left with long-term damage, known as an acquired brain injury (ABI).
Jago is now able to swallow pureed food from a spoon. His eyesight seems to be unimpaired, he responds to music and he can sit up and lift his head. He even appears to be vocalising.
An estimated 1,000 children a year in Britain get an ABI, with the effects of this damage almost impossible to predict. The brain continues to develop well into adulthood, so a child with ABI might never develop certain skills at all.
‘The long-term outcomes are better for those who have a brain injury when they are older — say 15 — than when they are really young,’ explains Dr Gail Hermon, clinical director for rehabilitation at the Children’s Trust in Tadworth, Surrey, where Jago is now in residential rehab. ‘If you can already walk and talk, read and write and use a computer, those skills may come back. New learning is much harder for the brain.’
But ABI is known as the ‘hidden disability’ because some problems don’t show up until a later stage in a child’s development.
Children with injuries to the frontal lobes of the brain — responsible for decision-making and problem-solving — may appear to be coping well until the age of 12, when they start to need these skills more. Jago sustained a hypoxic brain injury, caused by lack of oxygen, which means the whole of his brain has been affected.
‘A child with an acute brain injury like Jago may end up completely physically dependent but cognitively able — they may be able to use communication aids like Stephen Hawking,’ says Dr Hermon. ‘It’s even possible that they could be talking and walking.’
But, equally, the improvements may be minimal. And the effect on the family can be overwhelming. The death or illness of a child is a significant predictor of marital breakdown, but Lyn and Barney remain close.
‘We were always strong, and we’ve stayed that way,’ says Barney.
‘We discussed it early on and decided it wasn’t about blame. That doesn’t help anyone. It was just a tragic accident.’
Both parents have taken compassionate leave from their jobs, but they rarely see one another as, during term time, Barney spends weekdays with Riley and Ferdie in Northamptonshire, while Lyn is with Jago at the Trust in Tadworth, where the whole family meets at weekends.
Having to spend so much time there, 100 miles from their home, has put a huge strain on family life‘For the boys, this way of life has sort of become normal,’ says Lyn.
‘They’ve even made friends here at Tadworth. But I can’t let myself think about my children and my husband being somewhere else, otherwise I’d never get up in the morning.’
She finds that being at home can be even harder than being alone at Tadworth.
‘The whole house is full of memories — little ghosts of Jago. I look in his bedroom and he isn’t there. 'Sometimes, I think I hate it there, but I couldn’t uproot the boys after what they’ve been through.’
'If Jago doesn't get the support of these therapies, he will end up with spasticity and all sorts of other complex problems further down the line,' said Barney.
The Worralls are keen to get Jago home as soon as possible, but the problem is ensuring a continuity of care to maximise Jago’s potential.
At Tadworth, he receives daily speech therapy, physiotherapy and occupational therapy, but it’s extremely expensive for the NHS to fund. A place there is estimated to cost £1,200 a day.
However, the Worralls have been told by their primary care trust to expect no more than half-an-hour a week of therapy at home.‘The NHS is fantastic at saving lives, so more people are surviving with hypoxic brain injuries, but then there isn’t the care afterwards,’ says Lyn.
‘The rehab process lags far behind the life-saving process.
‘But if you save someone’s life and they are then profoundly disabled, what happens next? There aren’t the resources.’
Barney adds: ‘It’s a tough world out there at the moment and we’re not oblivious to that.
'But if Jago doesn’t get the support of these therapies, he will end up with spasticity and all sorts of other complex problems further down the line.
‘We have a window of recovery and the first couple of years are crucial, otherwise Jago will never have any kind of quality of life.’ Dr Hermon says children do sometimes regress once they leave Tadworth: ‘It is obviously a great shame — but it’s against a background of difficulties with funding and staffing.’
She says it is simply assumed the parents will take on the job as their disabled child’s therapist.
‘Jago’s parents have the right idea, but they’re going to need money,’ she says.
The Worralls estimate that to buy in the daily specialist services, 24-hour nursing care and rehabilitation tools that Jago needs to continue his recovery will cost them about £200,000 just for the first year. But with funding cuts to disability grants, they know they have to raise the money somehow themselves, so have set up the Jago Worrall Foundation.
They have already raised £20,000.
‘People we don’t even know in the village have come out to support us,’ says Barney.
‘The school has made Jago their charity. We’ve seen one of the most tremendous up-sides of living in an old-fashioned community. It’s been just incredible.’
This Thursday they are holding a fundraising dinner and auction in London, with celebrities such as Sadie Frost and Jamie Theakston offering support.
Lyn also plans to set up an information service to help other parents.
‘There’s so little information out there. I’d like to think the next time this happens to someone else, they can go straight to the website so they won’t feel as powerless as we did.’
‘We are a strong family and I know we will once again have the beautiful life we had before,’ says Lyn.
‘It will be different, but as long as we are all together, we can get through it.’
Culled from The Daily Mail UK.
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Simply Cheska...
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