Terminally-ill United Kingdom baby to spend final days in hospice

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Yesterday and today, Chris and Connie were in court trying to arrange for their 11-month-old son to be transferred from the hospital to their home, and allowed to spend his last moments there.

Great Ormond Street Hospital opposed the move, saying it was not practical to provide life-support treatment for days at the couple's home.

Mr Justice Francis has been hearing their arguments in the High Court and has yet to rule. It has suggested that he should be removed from life support within hours of being transferred to a hospice.

A High Court judge gave the involved parties until 12pm on Thursday (27 July) to come up with an agreement for Charlie's end-of-life care, which has now passed, though it was unclear whether any compromise had been reached.

The time had come for a...

The hospital, however, said even that would require a 24/7 intensive care team at the hospice, which it was unable to source.

Grant Armstrong, the lawyer for Ms Yates and Charlie's father Chris Gard, paid tribute to the nurses who have offered to help, working on their days off or between shifts.

Armstrong said hospital officials were placing obstacles in Charlie's parents' way. Shortly after birth, he was struck with an extremely rare disease called mitochondrial DNA depletion syndrome (MDDS).

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Children have rights separate from their parents' wishes under British law, and Judge Nicholas Francis said, "It is in Charlie's best interests to be moved to a hospice".

The hospital says it wants to resolve the issue through a mediator, but the parents have declined.

Dr Michio Hirano, an American neurology expert from Columbia Medical, previously said he believed there was at least a 10% chance his NBT therapy could improve Charlie's condition.

Charlie's parents had asked for more time to find a way for their terminally ill child to die outside of GOSH where he remains on life support.

Michio Hirano, MD, chief of the division of neuromuscular disorders and director of the H. Houston Merritt Clinical Research Center at New York City-based Columbia University Medical Center, traveled to London last week to examine Charlie and determine if he may be a candidate for an experimental treatment.

The Telegraph said the parents wanted Charlie moved to their flat in Bedfont, west London, but a judge refused. "Despite his condition in January, Charlie's muscles were in pretty good shape and far from showing irreversible catastrophic structural brain damage".

The couple abandoned their legal fight on Monday after concluding that Charlie had deteriorated to the "point of no return".

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