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Baby Charlie's parents granted more time to agree hospice plan

28 July 2017

Sadness, remorse and guilt are common emotions when conflicts occur at the end of life, but providing ways for parents to show their enduring love for their ill child may give them a lasting image of comfort and connection, even when death is imminent. "They have had to go through the most hard thing in the whole world - I can see that".

According to attorneys for the hospital, medics wanted to ensure the child was safe, and had asked for a mediator.

"She was grabbing her feet, putting toys to her mouth, that sort of thing".

Doctors said her brain matter is decaying rapidly, and she is dying.

They had wanted him at home with them on a ventilator for several days before palliative care began and their child was allowed to die.

The family has chosen to continue fighting and hoping instead.

The hospital also said that Charlie's ventilator would not fit through the door of his parents' west London home, and that the property's stairs and corners would make it hard to negotiate equipment through and would likely require Charlie to be taken off the ventilator to get inside. "PLEASE HELP US!. We need some peaceful time with our baby boy".

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The decision follows months of legal argument which culminated in Charlie's parents eventually dropping their battle to take him to the U.S. for experimental treatment on Monday. They raised more than $1.5 million for his care.

But GOSH and Charlie's parents were still in dispute over details of the final care plans.

Armstrong said Charlie's parents regarded that as only "a notch better" than the hospital.

Charlie has a rare genetic condition and will die once his life support is removed. It says it would like to fulfill the parents' wishes, but must also take the baby's best interests into account.

However the hospital said Charlie's "invasive ventilation" required constant monitoring by a trained nurse, with a doctor on call and close at hand. The hospital argued that neither allowing Gard to go home with the parents nor the parents' hospice plan were possible and that Gard should be kept at the hospital.

Barrister Grant Armstrong told a High Court judge the parents were "extremely distressed" by the results of new medical tests on the 11-month-old.

"It seems really upsetting after everything we've been through to deny us this", Ms Yates had said. "We are not bad parents, we are there for him all the time, we are completely devoted to him and he's not in pain and suffering, and I promise everyone I would not sit there and watch my son in pain and suffering, I couldn't do it".

Baby Charlie's parents granted more time to agree hospice plan