Charlie Gard: Parents end legal fight over baby’s treatment

Chris Gard and Connie Yates will hold discussions with hospital about how he should be allowed to die

The parents of Charlie Gard, a terminally-ill baby, say early treatment may have saved their son's life as they end their legal battle to pursue medical care in the United States. Video: Reuters

 

Charlie Gard’s parents have ended their legal fight over treatment for the terminally-ill baby.

Chris Gard and Connie Yates announced their decision as a High Court judge was preparing to oversee the latest round of a five-month legal battle.

They will hold discussions with his London hospital about how he should be allowed to die, their lawyer Grant Armstrong said on Monday.

Mr Justice Francis had been scheduled to analyse what the couple said was fresh evidence at a hearing in the Family Division of the High Court in London.

The lawyer told London’s High Court that time had “run out” for the child. “For Charlie, it’s too late, time has run out. Irreversible muscular damage has been done and the treatment can no longer be a success,” Mr Armstrong said

“Charlie has waited patiently for treatment. Due to delay, that window of opportunity has been lost.”

Charlie Gard, whose parents have ended a legal fight over treatment for the terminally-ill baby. Photograph: PA
Charlie Gard, whose parents have ended a legal fight over treatment for the terminally-ill baby. Photograph: PA

Charlie has a rare genetic condition causing progressive muscle weakness and brain damage. His parents had sought to send him to the United States to undergo experimental therapy. Britain’s courts, backed by the European Court of Human Rights, have refused permission, saying it would prolong his suffering without any realistic prospect of helping the 11-month-old child. US President Donald Trump and Pope Francis have voiced support for Charlie.

Connie Yates has told the High Court: “We only wanted to give him a chance of life.”

“This is one of the hardest things that we will ever have to say and we are about to do the hardest thing that we’ll ever have to do which is to let our beautiful little Charlie go. Put simply, this is about a sweet, gorgeous, innocent little boy who was born with a rare disease, who had a real, genuine chance at life and a family who love him so very dearly and that’s why we fought so hard for him,” she said.

Wasted time

“There is one simple reason for Charlie’s muscles deteriorating to the extent they are in now — TIME. A whole lot of wasted time. Had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy,” she said.

Fundraising

The parents have raised more than £1.3 million to pay for therapy in America. They say they want to use the money to establish a Charlie Gard Foundation. A lawyer who represented the couple outlined their plans for the money during Monday’s High Court hearing. “The parents reiterate their intention to establish a Charlie Gard Foundation with the donations received,” said barrister Grant Armstrong. “Accordingly it is now that his voice will go on to be heard as his legacy seeks to support other young children and families faced with similar circumstances.”

Bravery

Great Ormond Street Hospital paid tribute to the “bravery” of the decision made by the parents. In a statement, it said: “Over the weekend, they communicated their desire to spend all the time they can with Charlie whilst working with the hospital to formulate the best possible plan for his end of life care.

“The agony, desolation and bravery of their decision command GOSH’s utmost respect and humble all who work there.”

The comments came in a “position” statement prepared by the hospital’s QC Katie Gollop.

It said: “Whilst GOSH has striven to work with them throughout, Charlie’s needs have taken priority. “It is greatly hoped that in the days ahead it will be possible to extend to his parents the same quality of care with which Charlie has been provided and to concentrate on the family as a whole.”

Charlie’s parents had “fought long and hard for what they have been led to believe was a treatment that would give him a chance to be the Charlie he was before the effects of his illness became evident”.

Pitfalls of social media

The judge who oversaw the dispute over said the case highlighted one of the “pitfalls” of social media. Mr Justice Francis said the case had escalated to an “international scale” and had “even involved President Trump, the Vatican and Theresa May”.

He said he had to try cases on the basis on evidence. But he suggested that social media allowed people to express misinformed opinions. “I... made it clear that I could only consider the case on the basis of evidence and not on the basis of partially informed or ill-informed opinion, however eminent the source of that opinion,” he said on Monday. “I made it clear that I would always listen carefully to any new and material evidence.”

He added: “The world of social media doubtless has very many benefits but one of its pitfalls, I suggest, is that when cases such as this go viral, the watching world feels entitled to express opinions, whether or not they are evidence-based.”

Evidence

 

Professor Jonathan Montgomery, P

rofessor of Health Care Law, UCL, said : “The Charlie Gard litigation was brought bravely to an end by his parents. They have reviewed the most recent clinical and research evidence with their advisers and concluded that there is no prospect of securing any improvement in his condition. They have always had Charlie’s best interests at heart and they have demonstrated that today.

“The external scrutiny of this tragic situation was often ill-informed. In law medicine, and ethics, this was a case about what was best for Charlie. The parents and hospital always agreed on that.

“They interpreted his situation and the chances that the experimental treatment would help him differently. Quite properly, the issues were put before the court for consideration. Now that clearer evidence of damage to Charlie’s brain has become available, and the US expert has actually seen him to assess his condition, it has been possible to reach a common view.

Prof Dominic Wilkinson, Consultant Neonatologist and Professor of Medical Ethics, University of Oxford, said: “There are important lessons to learn from this case. Cases of deep disagreement between parents and doctors about treatment for a child are rare. Where they occur, it is often possible with time, patience, and support to find common ground.

“Where agreement cannot be reached, there is an important role for the courts in helping to reach a decision. However, court review of cases like this is not ideal. It is adversarial, costly, and lengthy. In this case, Charlie has received months of treatment that doctors and nurses caring for him felt was doing him more harm than good.

“We need to find better ways to avoid cases of disagreement from coming to court. There is an important role for mediation to help parents and doctors where they have reached an impasse.

and harmful treatment is not prolonged by a protracted legal process.”

PA/Reuters