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| Charlie Gard Set to Die in a Hospice After Parents Accept He Can’t Go Home | Charlie Gard Set to Die in a Hospice After Parents Accept He Can’t Go Home |
| (35 minutes later) | |
| LONDON — Charlie Gard, the chronically ill British infant whose condition has spurred widespread debate about end-of-life care and parents’ rights, will spend his last days in a hospice after his parents accepted that their desire for him to go home was not possible. | LONDON — Charlie Gard, the chronically ill British infant whose condition has spurred widespread debate about end-of-life care and parents’ rights, will spend his last days in a hospice after his parents accepted that their desire for him to go home was not possible. |
| But a court-mandated deadline of noon Thursday for the parents and the hospital to reach an agreement on when Charlie could be taken off life support passed with no immediate word of the outcome. | |
| “This indecision is compounding the parents’ misery,” Justice Nicholas Francis of the High Court said during a hearing on Wednesday. | “This indecision is compounding the parents’ misery,” Justice Nicholas Francis of the High Court said during a hearing on Wednesday. |
| During that hearing, Charlie’s mother, Connie Yates, repeatedly shook her head, visibly frustrated. At one point, she broke down in tears and shouted, “What if it was your child?” before fleeing the courtroom. | During that hearing, Charlie’s mother, Connie Yates, repeatedly shook her head, visibly frustrated. At one point, she broke down in tears and shouted, “What if it was your child?” before fleeing the courtroom. |
| Charlie, who turns 1 on Aug. 4, has a rare and debilitating genetic condition known as mitochondrial DNA depletion syndrome. He cannot see, hear, swallow or cry. | Charlie, who turns 1 on Aug. 4, has a rare and debilitating genetic condition known as mitochondrial DNA depletion syndrome. He cannot see, hear, swallow or cry. |
| This week, Ms. Yates, a caregiver, and Charlie’s father, Chris Gard, a postal worker, ended their monthslong legal battle to get the infant experimental treatment, which could have involved taking him to the United States, acknowledging that the infant’s illness was irreversible and that he should be taken off life support. | This week, Ms. Yates, a caregiver, and Charlie’s father, Chris Gard, a postal worker, ended their monthslong legal battle to get the infant experimental treatment, which could have involved taking him to the United States, acknowledging that the infant’s illness was irreversible and that he should be taken off life support. |
| But even the question of when and where he should die — and how long he should be kept alive — became a source of acrimony between the parents and the institution responsible for his care, Great Ormond Street Hospital. | But even the question of when and where he should die — and how long he should be kept alive — became a source of acrimony between the parents and the institution responsible for his care, Great Ormond Street Hospital. |
| The case caught the attention of Pope Francis and of President Trump, and underlined the perils of what can happen when a hospital and the parents of a sick child differ fundamentally about treatment and care, and communication between the parties breaks down. | The case caught the attention of Pope Francis and of President Trump, and underlined the perils of what can happen when a hospital and the parents of a sick child differ fundamentally about treatment and care, and communication between the parties breaks down. |
| The parents had said that their last wish was to spend several days at home with Charlie before his life support was removed. But Great Ormond Street Hospital said that the “invasive ventilation” that the infant required could be provided only in a hospital. | The parents had said that their last wish was to spend several days at home with Charlie before his life support was removed. But Great Ormond Street Hospital said that the “invasive ventilation” that the infant required could be provided only in a hospital. |
| It said the ventilator would not fit through the Gards’ front door in West London. | It said the ventilator would not fit through the Gards’ front door in West London. |
| The hospital said that the plan to end his life “must be safe, it must spare Charlie all pain, and it must protect his dignity.” It suggested that he should die in a hospice that would offer the parents the privacy they needed in their child’s final moments. | The hospital said that the plan to end his life “must be safe, it must spare Charlie all pain, and it must protect his dignity.” It suggested that he should die in a hospice that would offer the parents the privacy they needed in their child’s final moments. |
| If no agreement is reached, legal experts said, the hospital can proceed with its proposal to move Charlie to a hospice on Friday. Shortly after that, the life support would be removed. | |
| Grant Armstrong, a lawyer for the parents, initially accused the hospital of “creating obstacles.” On Wednesday, however, he said that the family had agreed that Charlie would move to a hospice and had found a team of doctors and nurses willing to care for him until life support was removed after about a week. | Grant Armstrong, a lawyer for the parents, initially accused the hospital of “creating obstacles.” On Wednesday, however, he said that the family had agreed that Charlie would move to a hospice and had found a team of doctors and nurses willing to care for him until life support was removed after about a week. |
| But Great Ormond Street Hospital said that arrangement was not feasible amid concerns that the doctor organizing the care was not a pediatric intensive care specialist. | But Great Ormond Street Hospital said that arrangement was not feasible amid concerns that the doctor organizing the care was not a pediatric intensive care specialist. |
| Dominic Wilkinson, a neonatologist and a professor of medical ethics at Oxford University, said that, while hospitals sometimes allowed very sick children to end their lives at home over the course of several hours, he was not aware of any hospital that would allow a terminally ill child to spend several days on a home ventilator. Such a move could include requirements such as round-the-clock medical attention and weeks of training the family to manage the equipment, he said. | Dominic Wilkinson, a neonatologist and a professor of medical ethics at Oxford University, said that, while hospitals sometimes allowed very sick children to end their lives at home over the course of several hours, he was not aware of any hospital that would allow a terminally ill child to spend several days on a home ventilator. Such a move could include requirements such as round-the-clock medical attention and weeks of training the family to manage the equipment, he said. |
| He noted that hospice care was often hugely beneficial for the parents “at an extraordinarily traumatic time.” | He noted that hospice care was often hugely beneficial for the parents “at an extraordinarily traumatic time.” |
| Robert D. Truog, a physician at the pediatric intensive care unit at Boston Children’s Hospital and director at the Center for Bioethics at Harvard Medical School, said the same policy on providing life support to terminally ill children at home applied at his hospital in the United States. | Robert D. Truog, a physician at the pediatric intensive care unit at Boston Children’s Hospital and director at the Center for Bioethics at Harvard Medical School, said the same policy on providing life support to terminally ill children at home applied at his hospital in the United States. |
| “We often take children home to die, and we are very proud of that,” he said. “But the life support is usually removed in the course of a few hours so that the child can die surrounded by family and loved ones.” | “We often take children home to die, and we are very proud of that,” he said. “But the life support is usually removed in the course of a few hours so that the child can die surrounded by family and loved ones.” |
| Charlie’s parents initially sought experimental treatment pioneered by Dr. Michio Hirano, a neurologist at Columbia University Medical Center in New York. The treatment had been tested on mice and on 18 people with a mutation in a gene known as TK2. But it had never been tried on someone with Charlie’s severe form of mitochondrial DNA depletion syndrome, which is caused by a different genetic mutation. | Charlie’s parents initially sought experimental treatment pioneered by Dr. Michio Hirano, a neurologist at Columbia University Medical Center in New York. The treatment had been tested on mice and on 18 people with a mutation in a gene known as TK2. But it had never been tried on someone with Charlie’s severe form of mitochondrial DNA depletion syndrome, which is caused by a different genetic mutation. |
| After an M.R.I. scan last week, medical experts concluded that the treatment would no longer be effective, and Charlie’s parents agreed that life support should be withdrawn. | After an M.R.I. scan last week, medical experts concluded that the treatment would no longer be effective, and Charlie’s parents agreed that life support should be withdrawn. |
| Great Ormond Street Hospital has chided Dr. Hirano for initially offering his advice on the case from across the Atlantic, before he had examined Charlie or reviewed his full medical records. The doctor examined Charlie last week, about six months after the hospital said it first invited him. | |
| The hospital said in a statement that it had also been concerned “to hear the professor state, for the first time, whilst in the witness box,” that he had retained a financial interest in some of the compounds used in the treatments for mitochondrial DNA depletion syndrome. | The hospital said in a statement that it had also been concerned “to hear the professor state, for the first time, whilst in the witness box,” that he had retained a financial interest in some of the compounds used in the treatments for mitochondrial DNA depletion syndrome. |
| But Dr. Hirano said in a statement that he had no financial interest in the treatment he had proposed for Charlie. | But Dr. Hirano said in a statement that he had no financial interest in the treatment he had proposed for Charlie. |