Parents of Terminally Ill British Baby Charlie Gard End Their Legal Fight: 'Time Has Run Out'
This article originally appeared on People.com.
The parents of terminally ill British baby Charlie Gard announced their decision to end their legal fight over treatment of their 11-month-old son on Monday.
A lawyer representing Chris Gard and Connie Yates told the High Court that “time had run out” for Charlie after a U.S. doctor said it was too late to give him nucleoside therapy. The parents were given the test results from Charlie’s most recent scans on Friday.
“Poor Charlie. It is too late. The damage has been done. Sadly time has run out,” Grant Armstrong told Judge Nicholas Francis as Chris and Connie sat in the courtroom with their heads bowed. “Sadly the window of opportunity no longer exists. The parents have taken an extremely hard decision.”
Charlie, who was born on August 4, 2016, has a rare genetic condition called mitochondrial depletion syndrome, which causes progressive muscle weakness and brain damage. He is currently on life support and unable to move his limbs or eat or breathe without assistance. His parents wanted to take him to the U.S. for nucleoside therapy.
“Charlie has suffered extensive muscular atrophy,” Armstrong said in court. “This is irreversible even with [nucleoside therapy]. Chance of improvement can’t now be delivered.”
Speaking in court on Monday, Yates said making the decision to “let him go” was the hardest thing she and her partner had done in their lives, and that they still believed his condition could have improved with treatment had it been administered earlier.
“We only wanted to give him a chance of life,” she said through tears. “A whole lot of time has been wasted.”
Judge Nicholas Francis said no one could begin to understand the parents’ agony but they now had to “face reality” that it is in their son’s best interests to die.
“I want to pay tribute to Chris and Connie. No parent could have done more,” he said.
Katie Gollop, the lawyer representing Great Ormond Street Hospital (GOSH) where Charlie has been receiving treatment since October, said the hearts of each person at the hospital “go out to Charlie, his mother and father.”
Outside the court, Charlie’s father, Chris, said in an emotional statement: “We will have to live with the ‘what-ifs,’ which will haunt us for the rest of our lives. Despite the way our beautiful son has been spoken about sometimes — as if he is not worthy at a chance at life — our son is an absolute warrior and we could not be prouder of him and we will miss him terribly.
“His body, heart and soul may soon be gone, but his spirit will live on for eternity and he will make a difference in people’s lives for years to come — we will make sure of that. We are now going to spend our last previous moments with our son Charlie, who unfortunately won’t make his first birthday in just under two weeks time.
“To Charlie, we say, Mommy and Daddy love you so much. We always have and we always will, and we are so sorry we couldn’t save you. Sweet dreams, baby. Sleep tight our beautiful little boy. We love you.”
The Family Division of Britain’s High Court in London previously ruled in April that medical experimentation is not in “Charlie’s best interest,” and denied the family’s request to travel to the U.S. for the treatment.
But Charlie’s parents asked judges to rule that their son should be allowed to undergo a therapy trial in New York.
Judge Francis scheduled a hearing on Monday to analyze the new evidence related to the proposed treatment, after Michio Hirano, a neurology professor at Columbia University Medical Center, traveled to London to evaluate Charlie.
At the start of the hearing, Armstrong said that once it was established that there was no medical chance for improvement, the parents accepted legal advice to withdraw legal proceedings.
The parents, who “wish to treasure time with Charlie,” plan to establish a foundation in his memory to help others.
On Friday, Great Ormond Street Hospital told the parents that the latest scan of Charlie’s brain made for a “sad reading.”
Gard reportedly yelled “evil” and Yates burst into tears because the parents had not yet read the report themselves.
On Saturday, Mary MacLeod, chairman of Great Ormond Street Hospital, said thousands of abusive messages including death threats had been sent to staff while families of other sick children had been harassed.
“We fully understand that there is intense public interest, and that emotions run high,” MacLeod said in a statement. “However, in recent weeks the GOSH community has been subjected to a shocking and disgraceful tide of hostility and disturbance.”
Yates said they had never condoned any threatening or abusive remarks toward the hospital’s staff.
“We are extremely upset by the backlash we have received after Great Ormond Street Hospital put out their statement,” she said. “Like them we have been shocked by some of the public response to this case and agree with them that it is disgraceful that doctors have received death threats.”
Yates described the situation as a “living hell.”
“I couldn’t sit there and watch him in pain and suffering, I promise you I wouldn’t,” she said in an emotional interview with BBC Breakfast, adding: “I think parents know when their children are ready to go and they’ve given up and Charlie is still fighting.
“It’s horrible that this decision has been taken out of our hands, it’s not just about us knowing best, it’s about having other hospitals and doctors saying we want to treat [Charlie] and we think it’s the best thing to do.”
She said she hoped the judge would take into account new evidence as when the decision was made previously, his chance was rated at being close to 0 percent but now this has been increased to 10 percent.
Charlie’s father, Chris, said that they would stop the treatment if they believed it was harming their son.
“If we won the court case and we got to America, and then within the first week of treatment he started suffering and he was in pain, we would let him go,” he said.
It is not immediately known how long Charlie will remain on life support at Great Ormond Street Hospital, but his parents will immediately meet with hospital staff to discuss his palliative care.