A MONTH TO SAVE CHARLIE
Judge grants parents 31 days to prove desperately ill baby can be kept alive against doctors’ wishes
A MOTHER last night told of the nightmare of being given a month to s ave h er b aby’s l ife.
Connie Yates’s son Charlie, who is seven months today, is desperately ill and doctors say he should be allowed to die.
Yesterday she begged a High Court judge for time to secure pioneering treatment in the United States. Mr Justice Francis agreed and gave her and her partner Chris Gard until April 3 to make their case.
‘It felt surreal, a nightmare,’ said Miss Yates, 31. ‘It is terrifying and we feel sick that in just a month Charlie’s fate will be decided. But we are grateful that we have this month to save Charlie. We have already done a huge amount of research into his condition but we will be working round the clock.’
Described by the judge as ‘utterly devoted’ parents, the couple have found an American doctor offering to treat Charlie.
Their son is believed to be only
the 16th person in the world to be diagnosed with his particular strain of mitochondrial depletion syndrome – which saps energy from the organs and muscles.
His lungs are so weak he is being kept alive on an artificial ventilator in intensive care at Great Ormond Street Hospital, in London. But there is no accepted cure for his condition and doctors there believe they have exhausted all treatment options.
The hospital has asked the High Court to agree it would be in Charlie’s best interests to withdraw the artificial ventilation and allow him to die with dignity.
Charlie’s parents looked red-eyed and bereft as they walked into the court yesterday facing a life-or-death legal struggle over their tiny son. Mr Justice Francis said it was one of the saddest cases to come before the court and ‘the most tragic situation’.
He promised them ‘whatever the rights and wrongs of the case and whatever the outcome’ they had his deepest sympathy.
The court heard that a hospital in Spain has also taken the view that Charlie ‘cannot be effectively treated’, but that medics in the US have offered an experimental therapy which is said to have shown promising signs.
The American hospital, which cannot be named for legal reasons, accepted Charlie as a prospective patient on Wednesday this week. He would require an air ambulance equipped with intensive care facilities and doctors and nurses to fly him there.
His family has set up a GoFundMe web page to raise money.
Miss Yates said last night: ‘Today made us realise the magnitude and the huge battle we face. Yet we have taken strength by all the support we have received, for example reading the messages from Mail readers and on our GoFundMe page.
‘It has helped us so much to read these messages and know how much the public are supporting us.
‘We appreciated the kind words from the judge. He was right in what he said about it being a heartbreaking case and that gave us comfort. The American doctor we are in contact with is an eminent neurologist, one of the most respected doctors in the world and incredibly experienced in this field.
‘If we had any doubt that the treatment he plans for Charlie was not in his best interests – or it was not bona fide medical treatment – we would simply not even consider it. But we have seen unpublished research for ourselves – research from eminent US hospitals which we want the UK doctors to take a proper look at – and have seen how potentially good the results can be. This is why we still have real hope that this could save Charlie’s life and potentially other lives.’ The court was told Charlie is deaf and cannot cry, making it difficult to assess whether he is suffering.
Great Ormond Street’s QC, Katie Gollop, said the hospital felt that ‘every day that passes is a day that isn’t in the child’s best interests’ and would like his treatment to be withdrawn by Easter so he could die with dignity.
But 32-year-old Mr Gard told the Mail: ‘When the hospital lawyer said that about “every day that goes by isn’t in the child’s best interests”, that was a like a knife to our hearts. We do not agree, because we can see Charlie is comfortable. He is growing and looks bonny – not signs of a child in any pain.’ Despite the hospital’s application to the court, made last week, Charlie’s parents realised only this week that medics actually thought their son was better off dead. They rushed to hire a solicitor on the evening before yesterday’s hearing, and then at midnight barrister Sophia Roper was instructed.
She told the court: ‘His parents believe Charlie is in much better shape than the hospital does.’
Mr Justice Francis, sitting in the Family Division, said: ‘This is a very, very sad and tragic case … one of the saddest types of cases to come before this court. His parents have been described as utterly devoted to Charlie and work extremely hard to be expert parents in this disease.’
Charlie was born healthy on August 4 last year, weighing 8lb 3oz, but after delighting his firsttime parents with smiles at just six weeks he became progressively weaker, and was admitted to hospital at eight weeks old.
For the past few months, Miss Yates, a carer, and Mr Gard, a postman, from Bedfont, south-west London, have practically lived at Great Ormond Street Hospital.
Mr Gard spends 14 hours a day from 10am to midnight stroking his son’s hand, reading him stories
and chatting to him. Miss Yates arrives at 11am and stays until 4am. They take it in turns to lie on the bed and cuddle Charlie.
Yesterday the judge was told they were anxious to keep the hearing as short as possible to get back to his bedside.
Miss Yates has told the Mail how ‘in those precious moments in that hospital room we are a family together, a team’, adding: ‘If we change his nappy, he moves his arms. Occasionally, he manages to open his eyes. It is such a struggle because this wretched disease affects every part of the body – it even makes his eyelids weak.
‘But if we lock eyes we can see him trying to open them wider. And we feel that our presence calms Charlie. It’s not much, but every little flicker convinces us that we, his Mummy and Daddy, are doing the right thing to not give up on him.’
Great Ormond Street Hospital has said in a statement: ‘Charlie has a very rare and complex disease, for which there is no accepted cure.
‘Charlie was very unwell when he was admitted to Great Ormond Street Hospital and has remained under 24-hour care on our intensive care unit. We have tried to strengthen Charlie and give him the best possible chance of survival. But his condition has continued to deteriorate and we now feel we have exhausted all available proven treatment options.
‘We appreciate how hugely distressing this is for his family and we continue to support them in every way we can, while advocating, what we believe, is best for Charlie.’
Yesterday the judge said: ‘I will end by wishing everybody the best possible outcome to this appalling case.’