London - A British judge gave the parents
of Charlie Gard until noon on Thursday to agree arrangements for
his death with the hospital caring for him, failing which he
would be transferred to a hospice where his ventilation tube
would be removed.
The 11-month-old baby, who suffers from an extremely rare
genetic condition causing progressive brain damage and muscle
weakness, has been the subject of a bitter dispute between his
parents and Great Ormond Street Hospital in London.
The case has triggered a heated international debate in the
press and on social media about who should decide a child's
fate, and has drawn comment from US President Donald Trump and
Pope Francis.
Having reluctantly taken the decision over the weekend to
let Charlie die, his parents have been making desperate attempts
to make an arrangement that would make it possible for them to
spend several days with him, away from hospital.
Charlie requires invasive ventilation to breathe and cannot
see, hear or swallow.
At stake in this final, agonising part of the legal dispute
is how long Connie Yates and Chris Gard will have with their son
before he dies.
Supporters of Charlie Gard’s parents react outside the High Court during a hearing on the baby’s future, in London. Picture: Peter Nicholls/Reuters
The parents tried for several days to gain permission to
take their son home, but as Wednesday's court hearing progressed
it became clear that would not happen because the logistical
problems were insurmountable.
The parents had made clear that if they could not take
Charlie home, they would prefer him to die in a hospice rather
than in the hospital, where he has spent most of his life.
But a lawyer for Charlie's court-appointed guardian told the
court that no hospice could provide care for intensively
ventilated children for a long time, so the parents' wish to
spend several days with him could not be fulfilled.
The parents have been trying to find a doctor willing to
oversee a plan that would allow Charlie to be ventilated in a
hospice for several days. It was to give them a final chance of
making such an arrangement that the judge gave them until noon
on Thursday.
"Unless by 12 noon tomorrow the parents and the guardian and
the hospital can agree an alternative arrangement, Charlie will
be transferred to a hospice and extubated shortly after," said
Nicholas Francis, the judge presiding over the case.
Mother in tears
An alternative arrangement appears unlikely, given the total
breakdown in relations between the parents and the hospital.
The judge ordered that the name of the hospice and the exact
timing of Charlie's last moments should not be disclosed to the
public.
At one point, Yates shouted in court, apparently at
Charlie's guardian: "What if it was your child? I hope you are
happy with yourself." She then left the courtroom in tears.
At the start of the hearing, the parents' lawyer Grant
Armstrong had said they had found a doctor who could help them.
But the guardian's lawyer, Victoria Butler-Cole, later said
the person in question was a general medical doctor with no
experience of intensive care, and that he had not identified any
hospice willing to undertake intensive care for a long period.
Butler-Cole said the parents should spend the last few days
of Charlie's life with him, not with their lawyers.
The dispute first made headlines months ago, when Charlie's
parents wanted to take him to the United States to undergo
experimental treatment.
The Great Ormond Street doctors said it would not help and
would only prolong the baby's suffering. British courts, backed
by the European Court of Human Rights, refused permission,
saying the parents' plan was not in Charlie's best interests.
The parents gave up the legal battle on Monday, saying that
the latest scans showed Charlie's condition had deteriorated to
the point that no recovery was possible. But they remain
convinced that the treatment might have helped Charlie had he
received it months ago.
The hospital disagrees. It says Charlie had suffered
irreversible brain damage by January as a result of a series of
seizures, and his responsiveness has not changed since then.