Why A European Court Ruled Devastated Parents MUST Take Baby Charlie Gard Off Life Support

Photo: BBC
Sad Details Of European Court Ruling That Parents MUST Take Baby Off Life Support Rather Than Receive Treatment In The U.S.

Despite their having raised $1.5 for him to receive treatment in the U.S.

The European Court of Human Rights has issued the heartbreaking ruling that Connie Yates and Chris Gard, parents of 10-month-old infant Charlie Gard, will not be allowed to take their dying child to the U.S. in order to receive an experimental treatment for his rare genetic disorder.

Charlie's parents first made news headlines when they created a GoFundMe campaign in hopes of raising the £1.3 million (the equivalent of approximately $1.5 million) necessary to cover the costs of transportation to the U.S. and an experimental treatment they believe could save Charlie's life.

The story on their account, which as of today raised a total of £1,309,780 from 83,359 people in 4 months, reads as follows:

"Our gorgeous little 7-month-old boy Charlie has a devastating disease called mitochondrial depletion syndrome. Me and his Daddy Chris are both carriers of a faulty gene. (This was unknown to us until Charlie was 3 months old)

He was born on the 04/08/16 (4th of August) perfectly healthy but then he started to decline. We took him into hospital at 8 weeks old and none of us have been anywhere near home since. We have been with Charlie day in, day out & watched our poor baby get weaker and weaker, he now needs a ventilator to breathe but we have never lost hope throughout all this time! After endlessly researching and speaking to Dr's all over the world we found hope in a medication that may help him and a Dr in America has accepted him in his hospital. It hasn't been tried on anyone with his gene before (he's only number 16 in the world ever reported) but it's had success with another mitochondrial depletion syndrome called TK2 which is similar - it's helping children to get their strength back and live longer! We strongly feel as his parents that Charlie should get a chance to try these medications. He literally has nothing to lose but potentially a healthier, happier life to gain.

Charlies condition is caused by a disruption in the mitochondria, the part of the cell that provides energy to his muscles, kidneys and brain. There is a new treatment available which is a nucleoside bypass therapy, which could potentially repair Charlie's mtDNA and help it synthase again by giving him the naturally occurring compounds that his body isn't able to produce. It's oral medication so nothing invasive or harmful.

We are running out of precious time with our baby, he can't have this treatment in the UK so our only hope now is to get Charlie to America - this will obviously cost us a ridiculous amount of money, money unfortunately don't have enough of ...

If Charlie receives this treatment and it does work like the Dr in America thinks, it won't be just Charlie's life that has been saved, it will be many more children in the future, who are born with this horrible disease and it will open up other trials on other mitochondrial depletion syndrome's.

We need to change things and show how determined parents can forge a path for other families encountering similar obstacles. We need to find treatments for incurable diseases. We need to give other people hope. We need to start saving lives.. hopefully starting with Charlie xxx"

Here are the 5 most critical details and facts to know about this tragic case.

1. Charlie's life-threatening condition.

Charlie was born with a condition known as mitochondrial DNA depletion syndrome.

According to the database of hereditary ocular diseases at the University of Arizona Health Sciences, this is actually a category of syndromes in which a child will begin to develop normal, but by "10-18 months of age, muscle weakness and coordination become evident." In Charlie's, he presented as a typical newborn for the first six weeks of his life.

Charlie is thought to be one of only 16 people know to have the condition, which is "caused by a genetic mutation, [which] leads to weakened muscles and organ dysfunction, among other symptoms, with a poor prognosis for most patients."

2. The proposed experimental treatment.

While the unidentified American neurologist who would have been the one to provide Charlie's treatment told the court that “he certainly will die without treatment,” he also admitted that he believes Charlie to be "in the terminal stages of his illness," the proposed 6 months of treatment could potentially result in Charlie being "left worse off than he is at the moment” and that he might “continue to deteriorate and ... lose all brain function."

Additionally, the physician was certain to state that he was “not suggesting that [the treatment] can provide a cure for Charlie” and he agreed that the hospital's wish to remove Charlie from life support can be considered a “reasonable position."

3. The hospital's position.

A pediatric specialist at Great Ormond Street Hospital explained the medical team's reasoning for seeking the court's permission to switch off Charlie's ventilator was that transporting Charlie to the U.S. for this treatment would be too stressful and painful for the infant and that he should instead "be allowed to die in dignity" given their belief that he is “extremely unwell” and "likely to be feeling pain."

She further asserted that "Charlie is suffering and that outweighs the small theoretical chance that this may be effective treatment.”

4. Prior court decisions.

The case was first brought to the Family Division of the High Court in London by the hospital in March of 2017.

In a statement to the press the court shared the following:

"The domestic courts concluded that it would be lawful for the hospital to withdraw life sustaining treatment because it was likely that Charlie would suffer significant harm if his present suffering was prolonged without any realistic prospect of improvement, and the experimental therapy would be of no effective benefit."

In May of 2017, Charlie's parents took the case to the U.K. Court of Appeals, where the ruling was upheld, and then to the UK Supreme Court, where judges again affirmed the hospital's position that Charlie should be allowed the right to die with dignity.

This most recent decision by the ECoHR is likely the final chapter in the family's fight to keep their child alive.

As stated by sources reporting for the BBC:

"European Court judges have now concluded it was most likely Charlie was 'being exposed to continued pain, suffering and distress' and undergoing experimental treatment with 'no prospects of success ... would offer no benefit ... They said the application presented by the parents was 'inadmissible' and said the court's decision was 'final' ... The court 'also considered that it was appropriate to lift the interim measure' which had required doctors to continue providing life support treatment to Charlie ...

BBC health correspondent Fergus Walsh said it is likely Charlie's life support machine will be turned off within a few days following discussions between the hospital and his family."

5. How a case like this might be handled in the United States.

It's extremely difficult to predict whether a court in the United States might take a similar position in such a sensitive case as this.

Parental Rights laws in the U.S. do generally attempt to uphold both parents' decision-making authority regarding any life-saving measures to be taken (or not taken) in the best interests of their child. However, various factors as applied within various states, such as legal definitions of death, jurisdiction of the courts to appoint a legal guardian to represent the interests of the child, and other potential means of authorities to interfere "on behalf of the child" make the outcome of any one situation as certain a potential reality as the next.

One thing we can all be certain of in this instance is that our hearts break for the loss of baby Charlie and for his parents, Connie and Chris.