CHARLIE GARD IS a name with which many people have become familiar in recent months.
Charlie, who is 11 months old, suffers from a rare genetic condition and has severe brain damage. He is on a life support machine at Great Ormond Street Hospital (GOSH) in London.
He has been at the centre of a legal battle in recent months. In June, the European Court of Human Rights (the ECHR) rejected an appeal by his parents, Chris Gard and Connie Yates, who had argued that he should undergo experimental treatment in the US.
It was expected that Charlie’s life support machine would be turned off shortly after this, but the case is now back before the UK High Court to give his parents a chance to present new evidence that they say proves the experimental treatment could help their son.
The parents, who have raised over £1.3 million (about €1.46 million) online, say the treatment in question has a 10% chance of improving their son’s condition.
In a statement, they said: “If your child was ill and you had the choice of giving them a non-harmful medication that clinically had a 10% chance of important improvement would you take that chance? This is why we are fighting.”
The latest hearing in the case is due to take place later today.
Charlie has a very rare mitochondrial disease. These type of diseases result from failures of the mitochondria, which are present in every cell of the body (except red blood cells) and responsible for creating more than 90% of the energy needed by the body to support organ function.
There are different types of the condition, which primarily affects babies and children, but sometimes doesn’t develop until later in life. The prognosis varies, but babies with the condition often die before their first birthday.
Three years ago, a case involving a baby with mitochondrial syndrome came before the Irish High Court. In summer 2014, the HSE made an application for permission to allow the hospital treating the baby, then nine months old, to not resuscitate them should their condition deteriorate.
The baby, who cannot be identified for legal reasons, was admitted to hospital in November 2013 after suffering from seizures in the weeks after their birth. They were diagnosed with mitochondrial syndrome in March 2014.
The HSE had argued that CPR or ventilation would be very invasive and noted that babies with this condition are not expected to survive beyond a year.
‘Never believed in a miracle’
Mark Harty SC represented the baby’s parents in court. Recalling the case, Harty told TheJournal.ie the parents “never believed there could be a miracle”, but wanted to know they had done everything they could to help their child.
“At the hearing, everybody accepted that the condition was terminal. Everybody accepted that the child in question was going to die.”
During the case, the HSE referenced a High Court case from 2012, involving a six-year-old boy who was a ward of court. There are a number of reasons why a person under the age of 18 may be taken into wardship. The most common situation is where the person has been awarded substantial damages by a court and has special housing or care needs.
When the boy in question was 22 months old he almost drowned in an incident which resulted in prolonged cardiac arrest and extensive, irreversible brain damage. In that case, the judge ruled that using ventilation on the boy “would involve unnecessary pain and discomfort and would be futile”.
Harty and his colleagues argued that the case in 2014 was different as the baby at the centre of it was not a ward of court. Ultimately, High Court President Justice Nicholas Kearns never made a judgment in the later case.
In the months after the hearing, Harty said mediation continued between the hospital and the parents.
It’s important to say there was a willingness on the part of the parents and the HSE to work out a way to go forward in the best interests of the child. We did try to mediate a situation between the parents and hospital to see if we could improve the lines of communication.
Harty noted that doctors are “compassionate people”, stating that over time: “I think the parents felt they were getting the correct support from the hospital. Everybody worked out a way forward.”
Speaking about the mother in the case, Harty said: “She knew that the baby would die in infancy, her only concern was that she did everything she could for her baby while they were alive.”
The baby at the centre of the 2014 case lived until they were two-and-a-half years old. The parents had hoped their child would have been able to live at home for a period of time, but this didn’t happen due to the level of care they needed.
When asked for a comment about the case, a spokesperson for the HSE said they don’t comment on individual cases.
‘Tied up in a circus’
Harty said he advised the parents at the centre of the Irish case against going public. He said he was concerned that “ultra religious” people would try to become involved.
Harty said situations like this can lead to the family in question becoming ”part of someone else’s agenda, to the point it’s no longer about your child’s needs”.
As is the case in Charlie Gard’s case, it’s now about the everybody but Charlie Gard. The parents are tied up in a circus.
Everyone from Pope Francis to Donald Trump has weighed in on the Gard case.
Harty noted that relations between the parents and doctors in the Irish case remained on relatively good terms, whereas Charlie Gard’s parents seem to have “lost faith” in doctors at GOSH.
“[Charlie's] parents are firmly of the view that the hospital sees their baby as a problem to be gotten rid of.”
Harty said another difference in the UK case is that the parents “are being sold a miracle cure concept”, while “the parents [in the Irish case] never believed there could be a miracle”.
The Guardian reports that the UK High Court was told on Monday a US doctor has suggested that, at a “conservative estimate”, the experimental treatment has a 10% chance of improving Charlie’s condition.
In its ruling last month, the ECHR noted the “sensitive” nature of the case, but added: “The domestic court decisions had been meticulous, thorough and reviewed at three levels of jurisdiction with clear and extensive reasoning giving relevant and sufficient support for their conclusions…
“The domestic courts had concluded, on the basis of extensive, high-quality expert evidence, that it was most likely Charlie was being exposed to continued pain, suffering and distress and that undergoing experimental treatment with no prospects of success would offer no benefit, and continue to cause him significant harm.”
‘Prolonging his suffering’
Earlier this week, GOSH released a statement explaining why it applied to the UK High Court for a fresh hearing in the case.
The statement reads: “Two international hospitals and their researchers have communicated to us … that they have fresh evidence about their proposed experimental treatment. And we believe, in common with Charlie’s parents, it is right to explore this evidence.
“Great Ormond Street Hospital is bound by the ruling of the High Court which expressly forbids us from transferring Charlie for nucleoside therapy anywhere. This ruling has been upheld by the Court of Appeal, the Supreme Court and the European Court of Human Rights.
“It has also been supported unequivocally by some of the world’s most distinguished clinicians and scientists.
“The ruling also states that it is in Charlie’s best interests for artificial ventilation to be withdrawn, and for his clinicians to provide him with palliative care only.”
Regarding the latest development, the hospital said: “It will be for the High Court to make its judgment on the facts.”
The statement added: “Charlie’s condition is exceptionally rare, with catastrophic and irreversible brain damage.
“Our doctors have explored every medical treatment, including experimental nucleoside therapies. Independent medical experts agreed with our clinical team that this treatment would be unjustified.
Not only that, but they said it would be futile and would prolong Charlie’s suffering. This is not an issue about money or resources, but absolutely about what is right for Charlie.
“Our view has not changed. We believe it is right to seek the High Court’s view in light of the claimed new evidence.
“Our priority has always been, and will always be, the best interests of Charlie Gard. But our care and compassion also goes to the loving families of each and every one of the children we look after. We strive to ensure we give them limitless support at these most difficult of times.”
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