MIRACLES DO HAPPEN
He defied predictions – he’s proof that doctors get it wrong Like Charlie Gard, little Elijah was deaf, blind and brain-damaged. Like Charlie, doctors wanted to turn off his life support. Like Charlie’s parents, his mum refused. And the amazing story of
GABRIELLE ALI will forever be defined by one moment of bravery – a moment that saved the life of her son. Unable to walk, talk or communicate, tenyear-old Elijah lay plugged in to a life-support machine at Great Ormond Street Hospital (GOSH) when Gabrielle was told the hospital authorities wanted to switch the machine off.
But like the embattled parents of baby Charlie Gard, her answer was a determined ‘No’.
Today, following a shattering three-year fight, Gabrielle’s instincts have been proved triumphantly correct.
Although once in a vegetative state like Charlie, Elijah has made miraculous progress.
Now 13, he breathes on his own, can move his arms and head, and communicates through computer technology and by blinking.
With support, he can sit upright, he can follow some commands, and, if held, can kick a ball.
It is the sort of news Charlie’s parents, Chris Gard and Connie Yates, will be longing to hear as they fight the hospital to give their child one last chance.
The similarities are clear. Both children fell into what doctors described as a vegetative state, suffered severe brain damage and could breathe only with the aid of life-support systems.
In both cases, doctors argued that they could never recover with any quality of life.
Charlie, who suffers from an inherited condition called mitrochondrial DNA depletion syndrome, cannot move or see, and his parents have been pressing for him to be taken to America to have a revolutionary new drug treat- ment. A court decision is expected this week.
Now Gabrielle has decided to speak out against senior medics who, she says, are determined to ‘play God’.
‘I know and understand what Charlie’s parents are going through first-hand,’ she says from her home in Hertfordshire. ‘It was an almost identical situation to the one we faced.
‘And if Elijah has a chance after being clinically dead and brought back to life and he’s doing so well, then Charlie has a chance too. Elijah defied all their predictions. He is proof that doctors can get it wrong. Proof that miracles can happen.
‘Doctors were determined to turn off Elijah’s life-support machine.
‘They said he would never breathe on his own, was blind, and, if he lived, would be in constant pain.
If I had given up, Elijah wouldn’t be here today – he’d be dead
But I refused to agree. I kept researching what could be done to help him.
‘I just kept pushing. I wouldn’t give up on my son.
‘Doctors said he was blind, but he is not – he communicates with me by blinking for “Yes”, and widening his eyes for “No”.
‘He can move his head and his arms – he’s able to eat pureed food. He makes sounds.
‘Recently he has just started to smile again.’
Despite early health problems, including congenital heart defects, Elijah had grown into a lively little boy who practised the martial art ju jitsu and played the drums and piano when, in April 2014, catastrophe struck. Gabrielle says Elijah was given a blood thinner, heparin – against her wishes, but on the guidance of doctors at Great Ormond Street Hospital. Elijah went into immediate cardiac arrest in Gabrielle’s arms and in the time it took to restart his heart, he suffered severe brain damage. Precisely what happened and who was to blame remain the subject of legal dispute between Gabrielle, GOSH and Watford General Hospital. But there was no disputing the damage. Despite emergency brain surgery, at one point Elijah was judged to be clinically dead. And only a few hours after he was put on the life-support machine, the hospital told Gabrielle that her son’s case was hopeless. Aside from her sheer determination, Gabrielle had another important weapon: she works as a scientist in hospital laboratories. Knowing the NHS from the inside, she felt strong enough to make her case, she says, and at one point even went to the lengths of videoing her son to prove he still had movement in his limbs. ‘I could see signs of life but they were adamant that his life-support should be turned off,’ she says. ‘I refused because I thought the doctors were wrong. I could still see signs of life.’
She says the hospital threatened legal action to enforce their decision, although her steady determination seemed to hold them off.
‘I think I won that battle with my persistence, almost by default,’ Gabrielle says.
And she was proved correct. On May 15, 2014, when Elijah’s support was switched off, it was found that he could breathe on his own and, bit by bit, started to recover.
It would be two years – including seven months in intensive care – before Gabrielle would have her little boy back home.
And every week of that, she says, has been a battle with the medical authorities.
This includes her fight to put Elijah on Zolpidem, a drug which is normally used for insomnia but which has been shown to help brain-damaged patients.
She says that despite the scepticism of GOSH, tests with Dr Ralf Clauss, a South African expert who is a lead consultant at Guildford in Surrey, showed Elijah’s brain responded to the drug. And she is convinced the result is continued improvement in her son.
‘He uses Eye-gaze computer technology for communication which uses his eyes looking at the computer screen to control images happening on the screen.
‘Soon he will begin hydrotherapy which we hope may ultimately help him to walk again.’
Today Elijah uses a Pod Book, an A3-sized book with words and pictures. You look at where he’s looking to see what he is thinking and feeling.
He now also makes sounds to express how he feels. There is evidence, Gabrielle says, he may be trying to form words. ‘He has come a very, very long way and I believe he will come still further.’
For all her optimism, however, Gabrielle remains deeply hurt at the way she claims her family has been treated.
‘A lot of doctors are getting this “God complex”,’ she says. ‘But the only person who is God is God.
‘They need to understand these children were given to us as a gift. There are things we mothers know that are inexplicable.
‘During our time at the hospital [GOSH intensive care] in 2014, many babies died. Many of the mothers told me they felt bullied, pushed into a corner by the doctors and just couldn’t fight any more.
‘I don’t understand why those like myself – and Charlie Gard’s parents – who want to fight for their children, are not given an opportunity to do so.
‘If we’re happy to live with a disabled child and live with what we know will be a struggle why can’t we have that? It’s our decision.
‘All these children have is us. I’m a mother. I know my son.
‘I know what he feels and what he doesn’t feel.
‘If I had given up he wouldn’t be here today. He’d be dead.’ Now she has launched a website – elijahsmiracles.com – to help other parents who want to fight for their child’s right to life. And next year she will start training as a doctor, convinced that things must be done differently in the future.
Critics – not least doctors – continue to ask Gabrielle what quality of life Elijah has. He is still largely immobile and Gabrielle needs a team of seven carers to help her with her son’s day-to-day needs.
‘I think he has a good quality of life given the condition he is in,’ she says. ‘I make the point that a morbidly obese person also can’t move, wash themselves or do anything much at all. Are we suggesting they too should die?
‘Yes, it is a difficult situation but I’m more than happy to take on these difficulties as Elijah grows.
‘In this day and age, technology makes many things possible and I have more and more optimism.
‘We have taken him to the seaside in Brighton, to Sea Life, the theatre. It’s difficult. But it’s achievable. We’re planning to take him to Disneyland next year. It was always one of his dreams.
‘I know he wants to live, even though his condition would not be his choice.’
A spokesman for Great Ormond Street Hospital said: ‘For patient confidentiality reasons, we cannot discuss the specific details of Elijah’s care.
‘At Great Ormond Street Hospital we always seek to work carefully and sensitively with families to ensure every child entrusted to our care receives the best possible treatment and support.
‘It is always disappointing when we hear from patients and families who are not happy with the treatment we provide and we work very hard to resolve any dispute.’