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| Charlie Gard: judge to decide on parent's 'last wish' that son can die at home | Charlie Gard: judge to decide on parent's 'last wish' that son can die at home |
| (about 5 hours later) | |
| Day after parents end five-month legal battle, lawyer asks court why hospital is seeking to deny their ‘last wish’ | |
| Haroon Siddique | |
| Wed 26 Jul 2017 07.20 BST | |
| First published on Tue 25 Jul 2017 14.37 BST | |
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| A judge will decide on Wednesday whether to grant the “last wish” of Charlie Gard’s parents and allow their son to go home to die. | A judge will decide on Wednesday whether to grant the “last wish” of Charlie Gard’s parents and allow their son to go home to die. |
| A day after Connie Yates and Chris Gard ended their opposition to the removal of their critically ill baby’s life support system, the couple returned to court on Tuesday to ask that Great Ormond Street hospital’s objections to him being allowed to go home be overruled. | A day after Connie Yates and Chris Gard ended their opposition to the removal of their critically ill baby’s life support system, the couple returned to court on Tuesday to ask that Great Ormond Street hospital’s objections to him being allowed to go home be overruled. |
| During another tense hearing, the court heard the objections related to the impracticality of providing the intensive care 11-month-old Charlie is receiving in hospital at home for the “period of days” his parents want him kept alive. | During another tense hearing, the court heard the objections related to the impracticality of providing the intensive care 11-month-old Charlie is receiving in hospital at home for the “period of days” his parents want him kept alive. |
| Charlie Gard is born a “perfectly healthy” baby at full term and at a “healthy weight”. | Charlie Gard is born a “perfectly healthy” baby at full term and at a “healthy weight”. |
| His parents notice he is less able to lift his head and support himself than other babies of a similar age. Doctors discover that he has a rare inherited disease – infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS). | His parents notice he is less able to lift his head and support himself than other babies of a similar age. Doctors discover that he has a rare inherited disease – infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS). |
| Charlie has become lethargic and his breathing is shallow. He is transferred to Great Ormond Street hospital for children in London on 11 October. | Charlie has become lethargic and his breathing is shallow. He is transferred to Great Ormond Street hospital for children in London on 11 October. |
| A crowdfunding page is set up to help finance trial therapy in the United States. | A crowdfunding page is set up to help finance trial therapy in the United States. |
| Great Ormond Street hospital bosses ask the high court judge, Mr Justice Francis, to rule that life-support treatment should stop. | Great Ormond Street hospital bosses ask the high court judge, Mr Justice Francis, to rule that life-support treatment should stop. |
| The judge says doctors can stop providing life-support treatment after analysing the case at a hearing in the family division of the high court. | The judge says doctors can stop providing life-support treatment after analysing the case at a hearing in the family division of the high court. |
| Charlie’s parents ask three court of appeal judges to consider the case but less than three weeks later their appeal is dismissed. | Charlie’s parents ask three court of appeal judges to consider the case but less than three weeks later their appeal is dismissed. |
| Charlie’s parents lose their fight in the supreme court. | Charlie’s parents lose their fight in the supreme court. |
| The case proceeds to the European court of human rights but a week later it is announced that the European judges have refused to intervene. A Great Ormond Street spokeswoman says there will be “no rush” to change Charlie’s care and says there will be “careful planning and discussion”. | The case proceeds to the European court of human rights but a week later it is announced that the European judges have refused to intervene. A Great Ormond Street spokeswoman says there will be “no rush” to change Charlie’s care and says there will be “careful planning and discussion”. |
| It is thought that Charlie’s life-support is due to be switched off but his parents say that Great Ormond Street doctors have agreed to “give us a little bit more time” with Charlie. They ask for privacy “while we prepare to say the final goodbye”. | It is thought that Charlie’s life-support is due to be switched off but his parents say that Great Ormond Street doctors have agreed to “give us a little bit more time” with Charlie. They ask for privacy “while we prepare to say the final goodbye”. |
| Pope Francis and the US president, Donald Trump, intervene; the former calling for the couple to be allowed to “accompany and treat their child until the end”, saying he has followed the case with “affection and sadness”. | Pope Francis and the US president, Donald Trump, intervene; the former calling for the couple to be allowed to “accompany and treat their child until the end”, saying he has followed the case with “affection and sadness”. |
| Bambino Gesu, the Vatican’s children’s hospital in Rome, offers to take Charlie in. | Bambino Gesu, the Vatican’s children’s hospital in Rome, offers to take Charlie in. |
| Charlie’s parents return to the high court and ask Mr Justice Francis to carry out fresh analysis of the case. The judge says he will consider any new evidence. | Charlie’s parents return to the high court and ask Mr Justice Francis to carry out fresh analysis of the case. The judge says he will consider any new evidence. |
| The New York neurology professor who offered to treat Charlie travels to London to examine the little boy, discuss the case with Great Ormond Street doctors and other clinicians and examine fresh scans. | The New York neurology professor who offered to treat Charlie travels to London to examine the little boy, discuss the case with Great Ormond Street doctors and other clinicians and examine fresh scans. |
| The lawyer representing Great Ormond Street says the new scan makes for “sad reading”. | The lawyer representing Great Ormond Street says the new scan makes for “sad reading”. |
| Great Ormond Street chairwoman Mary MacLeod says doctors and nurses have been subjected to abuse in the street and received thousands of threatening messages. Charlie’s parents had previously urged people not to send abuse to Great Ormond Street staff. | Great Ormond Street chairwoman Mary MacLeod says doctors and nurses have been subjected to abuse in the street and received thousands of threatening messages. Charlie’s parents had previously urged people not to send abuse to Great Ormond Street staff. |
| The judge’s decision was initially expected the next day but a lawyer representing Charlie’s parents say they are ending their legal fight over his treatment. | The judge’s decision was initially expected the next day but a lawyer representing Charlie’s parents say they are ending their legal fight over his treatment. |
| But Grant Armstrong, the lawyer for Yates and Gard, said he was at pains to understand why the hospital sought to deny them their “last wish”. | But Grant Armstrong, the lawyer for Yates and Gard, said he was at pains to understand why the hospital sought to deny them their “last wish”. |
| He said: “We struggle with the difficulties which the hospital has placed in the way of the parents’ wish to have a period of time probably a relatively short period of time … before the final act in Charlie’s short life.” | He said: “We struggle with the difficulties which the hospital has placed in the way of the parents’ wish to have a period of time probably a relatively short period of time … before the final act in Charlie’s short life.” |
| The infant’s parents abandoned their fight to allow him to be flown to the US for experimental treatment on Monday, having determined it was no longer viable. | The infant’s parents abandoned their fight to allow him to be flown to the US for experimental treatment on Monday, having determined it was no longer viable. |
| But Armstrong said the couple had been forced to return to the high court in London on Tuesday for the “most difficult, emotional part of the case, [the] circumstances in which Charlie’s passing will be conducted”. | But Armstrong said the couple had been forced to return to the high court in London on Tuesday for the “most difficult, emotional part of the case, [the] circumstances in which Charlie’s passing will be conducted”. |
| He claimed that, having agreed in principle in April that it would be possible for Charlie to be flown to the US for treatment, it made no sense for Great Ormond Street hospital (Gosh) to say the child could not be taken to the family home in west London or that of one of their relatives – the parents’ two preferred options. | He claimed that, having agreed in principle in April that it would be possible for Charlie to be flown to the US for treatment, it made no sense for Great Ormond Street hospital (Gosh) to say the child could not be taken to the family home in west London or that of one of their relatives – the parents’ two preferred options. |
| But Katie Gollop QC, for Gosh, said the flight to the US would have required a specialist intensive care team, which would not be available in a home setting for days on end. | But Katie Gollop QC, for Gosh, said the flight to the US would have required a specialist intensive care team, which would not be available in a home setting for days on end. |
| She said the hospital was willing to fulfil the parental wishes if it was “practical, possible and safe, and in Charlie’s interests so that he comes to no harm”. | She said the hospital was willing to fulfil the parental wishes if it was “practical, possible and safe, and in Charlie’s interests so that he comes to no harm”. |
| Victoria Butler-Cole, the lawyer instructed by Charlie’s guardian, said the options with respect to him dying at home were withdrawing ventilation within “a matter of hours” or after “a period of days”. | Victoria Butler-Cole, the lawyer instructed by Charlie’s guardian, said the options with respect to him dying at home were withdrawing ventilation within “a matter of hours” or after “a period of days”. |
| But she said the latter option was unrealistic because it would require “replicating intensive care outside an intensive care unit”, including a team of three doctors. | But she said the latter option was unrealistic because it would require “replicating intensive care outside an intensive care unit”, including a team of three doctors. |
| Gosh said it was unable to provide such a team or source one from anywhere in the country. The court heard it was difficult to get medical professionals to provide such care at home because of the risk of complications and the fact that they would not be covered by insurance. | Gosh said it was unable to provide such a team or source one from anywhere in the country. The court heard it was difficult to get medical professionals to provide such care at home because of the risk of complications and the fact that they would not be covered by insurance. |
| Speaking after the hearing, Yates pleaded for any paediatric intensive care doctor to come forward to help them. She said: “We promised Charlie every day we would take him home. It seems really upsetting after everything we’ve been through to deny us this.” | Speaking after the hearing, Yates pleaded for any paediatric intensive care doctor to come forward to help them. She said: “We promised Charlie every day we would take him home. It seems really upsetting after everything we’ve been through to deny us this.” |
| Gollop said Gosh had identified a hospice that was willing to take Charlie, which she said had been difficult given the publicity surrounding the case. But, as Yates wept and held her head in her hands, Armstrong said that although that was preferential to Charlie dying in hospital it would still be seen as “brutality” if he were only there for a few hours. | Gollop said Gosh had identified a hospice that was willing to take Charlie, which she said had been difficult given the publicity surrounding the case. But, as Yates wept and held her head in her hands, Armstrong said that although that was preferential to Charlie dying in hospital it would still be seen as “brutality” if he were only there for a few hours. |
| Describing it as “the most difficult, painful process for the parents”, Mr Justice Francis urged the parties to resolve their differences outside the courtroom. | Describing it as “the most difficult, painful process for the parents”, Mr Justice Francis urged the parties to resolve their differences outside the courtroom. |
| Charlie has a very rare mitochondrial disease caused by a genetic defect inherited from his parents. The official diagnosis is infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, referred to generally as “MDDS”. | Charlie has a very rare mitochondrial disease caused by a genetic defect inherited from his parents. The official diagnosis is infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, referred to generally as “MDDS”. |
| Mitochondria supply energy to the cells in the human body. Mitochondrial failure leads to cellular injury and cell death. When multiple cells fail, the body’s organs are damaged and shut down. These diseases are usually fatal and kill children, although sometimes they don’t show up until adulthood. Where they don’t kill, they cause serious permanent brain damage. | Mitochondria supply energy to the cells in the human body. Mitochondrial failure leads to cellular injury and cell death. When multiple cells fail, the body’s organs are damaged and shut down. These diseases are usually fatal and kill children, although sometimes they don’t show up until adulthood. Where they don’t kill, they cause serious permanent brain damage. |
| Charlie is in intensive care at Great Ormond Street hospital in London, the leading children’s hospital in the UK. Life support machines are keeping him alive. The hospital says that he has severe brain damage, cannot move or breathe by himself, is deaf and has epilepsy. It says his heart, liver and kidneys are also affected. His eyelids cannot stay open and because of the weakness of the muscles, his eyes point in different directions and the damage to the brain will not allow his sight to develop. | Charlie is in intensive care at Great Ormond Street hospital in London, the leading children’s hospital in the UK. Life support machines are keeping him alive. The hospital says that he has severe brain damage, cannot move or breathe by himself, is deaf and has epilepsy. It says his heart, liver and kidneys are also affected. His eyelids cannot stay open and because of the weakness of the muscles, his eyes point in different directions and the damage to the brain will not allow his sight to develop. |
| As it became apparent there was no prospect of that happening, he said given what he had heard about the need for an intensive care team, were he deciding the issue on the civil standard of proof he would rule out the prospect of Charlie being ventilated for days, whether in a hospice or at home. | As it became apparent there was no prospect of that happening, he said given what he had heard about the need for an intensive care team, were he deciding the issue on the civil standard of proof he would rule out the prospect of Charlie being ventilated for days, whether in a hospice or at home. |
| But he went on to say that “given the gravity of the situation and the need to be as human as I can” he would give Charlie’s parents more time to make their case and make a final decision, in the absence of any unexpected developments, on Wednesday afternoon. | But he went on to say that “given the gravity of the situation and the need to be as human as I can” he would give Charlie’s parents more time to make their case and make a final decision, in the absence of any unexpected developments, on Wednesday afternoon. |
| At the end of the often acrimonious hearing, during which Butler-Cole told the court that the latest disagreement was a reflection of what happens when there was “such a fundamental breakdown in communications”, Armstrong, who was in tears in court on Tuesday, angrily confronted Gollop. | At the end of the often acrimonious hearing, during which Butler-Cole told the court that the latest disagreement was a reflection of what happens when there was “such a fundamental breakdown in communications”, Armstrong, who was in tears in court on Tuesday, angrily confronted Gollop. |
| Charlie Gard | |
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