Charlie Gard died after his life support was withdrawn soon after he was moved to a hospice, denying his parents their "final wish" for him to spend some time with their baby at home.
The little boy's parents, Chris Gard, 32, and Connie Yates, 31, had asked for more time with their son after he was transferred from Great Ormond Street Hospital, but U.K High Court judge, Justice Francis (full name) said doctors could stop providing treatment shortly after 11-month-old arrived at the hospice.
“Mummy and Daddy love you so much Charlie, we always have, and we always will, and we are so sorry that we couldn't save you,” said a statement released by the parents soon after the infant died on July 28. "Sweet dreams baby. Sleep tight our beautiful little boy."
“We just want some peace with our son, no hospital, no lawyers, no courts, no media, just quality time with Charlie away from everything to say goodbye to him in the most loving way,” a heartbroken Connie had said before moving Charlie to the hospice.
Chris and Connie were embroiled in a five-month legal battle with the hospital where Charlie was being treated, initially to gain permission to fly him to the US for trial treatment not available in the UK.
“We’ve had no control over our son’s life and no control over his death.” The judge decided on July 26 that the terminally ill baby would die at a hospice.
Charlie’s parents wanted their son to spend his last days with them at home in west London before dying.The couple had said previously they did not expect Charlie to survive until his first birthday on August 4.
Connie had earlier hit out at Great Ormond Street Hospital, which she said had "denied us our final wish".
Connie broke down in court after being told her final wish for her son, that he be allowed to spend a week at home before his death, had been turned down.
“What if that was your child?” she sobbed before saying: “I cannot be in the same room as him” (possibly the judge). She then stormed out.
The judge extended a deadline until noon on Thursday for Charlie’s parents to find a pediatric intensive care team that could look after him around the clock.
The precise timing of Charlie’s final hours was discussed at a closed-door hearing because of the sensitivity. The judge made an order that gave the precise deadline for Charlie’s removal from the hospital and the length of time he can remain in a hospice before his ventilator tube was removed.
Doctors caring for Charlie at the hospital had said it is not practical to provide the level of life-support treatment to Charlie at the couple's home for days. The issues include that his ventilator would not fit through their front door and so they said a better plan would be for Charlie to move to a hospice.
A touching social media post on July 27 by Charlie’s parents said: “URGENT we need a pediatric intensive care consultant to come forward to assist and facilitate with a hospice stay by 12pm tomorrow, we will pay privately.”
Charlie's parents began a new fight with doctors a day after abandoning attempts to persuade the judge to let their son travel to America for a trial treatment.
Barrister Grant Armstrong, who led the couple's legal team, petitioned Justice Francis that hospital bosses were placing obstacles in Charlie's parents' way.
"The parents wish for a few days of tranquility outside of a hospital setting," Mr. Armstrong said. He said the couple felt there was a "brutality" in taking Charlie to a hospice.
Barrister Katie Gollop QC, who leads the hospital’s legal team, said staff members had "moved heaven and earth" for Charlie. She said the couple's needs had to be balanced against Charlie's best interests.
Charlie had a rare genetic condition called encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). Though he had appeared perfectly healthy when he was born, his health soon began to deteriorate.
Charlie also had severe brain damage. He was unable to open his eyes or move his arms or legs. He was unable to breathe unaided, and needed to be on a ventilator. His heart, liver and kidneys were also affected, and his doctors said it was not clear if he felt pain.
Charlie's parents wanted him to have an experimental nucleoside therapy. A hospital in the US had agreed to offer the child the treatment, and his parents had raised funds to take him there.
Connie and Chris, a couple in their 30s, had initially asked Justice Francis to rule that Charlie should be allowed to undergo a trial therapy in New York. Doctors at Great Ormond Street said the therapy would not help. They also said life-support treatment should stop. Justice Francis in April ruled in favour of the hospital and said Charlie should be allowed to die with dignity.
Connie and Chris ended their opposition to the removal of their critically ill baby’s life support system, but returned to court to ask the hospital’s objections to him being allowed to go home be overruled.
The hospital said the option was unrealistic because it would require “replicating intensive care outside an intensive care unit”, including a team of three doctors.
Speaking after the hearing, Connie pleaded for any pediatrics intensive care doctor to come forward to help them. We promised Charlie every day we would take him home. It seems really upsetting after everything we’ve been through to deny us this,” she said.
Justice Francis had earlier urged the parties to resolve their differences outside the courtroom. As it became apparent there was no prospect of that happening, he said given what he had heard about the need for an intensive care team, were he deciding the issue on the civil standard of proof, he would rule out the prospect of Charlie being ventilated for days, whether in a hospice or at home.
Timeline of legal battle (Courtesy BBC)
3 March 2017: Mr. Justice Francis starts to analyze the case at a hearing in the Family Division of the High Court in London.
11 April: Mr. Justice Francis says doctors can stop providing life-support treatment.
3 May: Charlie's parents ask Court of Appeal judges to consider the case.
23 May: Three Court of Appeal judges analyze the case.
25 May: Court of Appeal judges dismisses the couple's appeal.
8 June: Charlie's parents lose fight in the Supreme Court.
20 June: Judges in the European Court of Human Rights start to analyze the case after lawyers representing Charlie's parents make written submissions.
27 June: Judges in the European Court of Human Rights refuse to intervene.
3 July: The Pope and US President Donald Trump offer to intervene.
7 July: Great Ormond Street Hospital applies for a fresh hearing at the High Court.
24 July: Charlie's parents end their legal fight to take him to the US for treatment.
July 25 - Lawyers representing Charlie's parents and Great Ormond Street Hospital are back in court for a hearing at which the parents' wish to take their son home to die was discussed.
July 27 – Court rules Charlie be moved to a hospice.
July 28 - Charlie dies, days before his first birthday.
A beautiful little life in pictures, Image Credit Daily Mail