Sleep tight, our beautiful boy: Charlie’s mom
THE terminally ill 11-monthold Charlie Gard died late yesterday soon after his life support was withdrawn.
The judge’s ruling on Thursday that he be moved to a hospice and his death saw an outpouring of emotion on social media.
Charlie, who had a rare genetic condition, spent most of his life under a spotlight of public interest. This amid a court battle between his parents, Connie Yates and Chris Gard, and the Great Ormond Street Hospital in London over his medical care.
His condition caused progressive muscle weakness and brain damage.
Last night, his mother said: “Our beautiful little boy has gone. We are so proud of you, Charlie.
“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.
“Sleep tight, our beautiful little boy.”
After the judge’s decision, Yates said: “Most people won’t ever have to go through what we have been through. We’ve had no control over our son’s life and no control over our son’s death.
“We just want some peace with our son… just quality time with Charlie away from everything, to say goodbye to him in the most loving way.”
The University of KZN paediatric palliative care team under the leadership of Dr Julia Ambler confirmed they were also involved in discussions around baby Charlie as a member of the International Children’s Palliative Care Network (ICPCN).
On Thursday, Ambler said: “The ICPCN has been in contact with the UK team. It is a landmark case and there are precedents which have been set. But it’s important to note that hospitals are making these decisions on a daily basis.
“For Charlie, undergoing more treatment was futile.
“It’s a very complicated decision and, with a baby, you can’t tell whether he is in pain or uncomfortable, which causes great anxiety.”
But she said the case had put paediatric palliative care in the limelight.
According to Ambler, the majority of terminally ill children in South Africa have cancer, although there are also genetic conditions which result in a terminal diagnosis.
“It’s not something people want to talk about. There is very little support for paediatric palliative care and there are very few specialists and organisations in this field.
“When a child is diagnosed, the families go through hell. It’s incredibly difficult. But we do have a process in place and a hospital-based team to help the child and the family,” said Ambler.
Yesterday Great Ormond Street Hospital said: “We deeply regret that profound and heartfelt differences between Charlie’s doctor and his parents have had to be played out in court over such a protracted period. All of us at Great Ormond Street Hospital get up every morning to care for sick children, not to cause further anguish to devoted parents.
“Sadly, as the judge has now ruled, there is simply no way that Charlie, a patient with such severe and complex needs, can spend any significant time outside of an intensive care environment safely. The risk of an unplanned and chaotic end to Charlie’s life is an unthinkable outcome for all concerned and would rob his parents of the last precious moments with him.”
The hospital arranged for Charlie to be transferred to a specialist children’s hospice, saying: “This is a very special place who will do all they can to make these last moments as comfortable and peaceful as possible.”