Charlie GARD: Who Decides?

A drama has been unfolding at the Great Ormond Street Hospital in London that has captured the attention of the world. Eleven month old Charlie Gard has been treated by the hospital for a very rare mitochondrial disease. He has brain damage and cannot breathe by himself.

The hospital wants to turn off his life support machine. Charlie’s parents, Chris Gard and Connie Yates, disagree. They have the opportunity to take Charlie to the United States to undergo experimental treatment which might, just might, prolong or improve his life. They managed to raise over $1 million for this purpose but the hospital said ‘No.’

The case was taken to the UK Supreme Court and they sided with the hospital. The court said there was no benefit to taking the child to the USA and his suffering would only be prolonged. Then Charlie’s case went to the European Court of Human Rights. They also agreed with the hospital and UK Supreme Court.

‘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,’ the said the court.

British Prime Minister Theresa May and Foreign Secretary Boris Johnson, though expressing sympathy for the parents, declined to intervene. Johnson’s spokesperson said, ‘ … it was right that decisions continued to be led by expert medical opinion, supported by the courts, in line with Charlie's best interests.’

The court decision paves the way for the hospital to turn off the machine at any time. The goal is for Charlie to ‘die with dignity.’ Yet, it is really time for Charlie to die?

The World Is Watching

Though Charlie’s parents have failed to persuade the hospital, courts, or their government, they succeeded in attracting world attention. Thirty-seven members of the European Parliament (MEP) expressed their support for Charlie’s parents to take their son to the USA. They wrote to PM Theresa May to express their ‘deepest concerns about the outrageous outcome and Charlie’s case, which infringes Europe’s most fundamental values, particularly the right to life, the right to human dignity and personal integrity.’

Their letter continues: ‘How is it then possible that even today, in the 21st century, in times when we ourselves designate our era as one which respects fundamental values of life and human dignity, that the United Kingdom does not act in the best interest of its citizens? Is this truly the way we want to go?’ they asked. The implied answer is ‘No.’

Pope Francis has offered the Vatican’s children’s hospital Bambino Gesu, which would take care of Charlie for the rest of his life. US President Donald Trump has offered to help in any way possible.

Two Issues to Consider

The tragic story of baby Charlie raises a variety of issues. While some will say ‘It’s complicated,’ in other ways it is amazingly simple. Two issues we need to address.

The one was raised by the 37 MEPS: The right to life. All civilisations encourage the fostering and preservation of life, if for the simple reason that without it there is no future. While leaving aside the issue of abortion, it is still generally agreed that life must be protected. The hospital and courts could argue that there is ‘no hope’ and that prolonging life is prolonging pain.

However, there is another way to look at it. If there is a chance, however small, to bring hope and healing, then a ‘life-affirming position’ is that opportunity should be taken. Taking Charlie to America sends a message that life is a priority, even if it is an uphill battle. Apparently, there is a boy in America who had a similar disease and is now 6 years old. An Italian child in a related situation has been treated and is surviving, too. Even if Charlie does not make it, the experiment in the USA could learn value insights to could help other children. If Charlie’s parents and the world can say, we done everything in our power, we fought a good fight, that would be a victory in itself.

Another fundamental issue has to do with parental rights. Who is better positioned to determine what is in ‘the best interests of the child?’ Is it the parents or is it the state? If we believe in the importance of family, and that parents are the best ones to raise their children, then ultimately it is the parents who should decide what is best for their child. A government-run and funded health care system provides universal benefits but it also takes away the decision making from the parents. It is the hospital, bureaucrats and the courts that decide what is in the child’s best interests. Basically, it is the old adage: He who pays the piper calls the tune.

Is it in a child’s ‘best interests’ to have the life-support machine turned off when there is the promise of treatment elsewhere? Is its the child’s best interests to die in a hospital room when they could die at home in the warm environment of parents?

When it comes to your child, who do you want to decide what’s in their best interests? With Charlie Gard, as well as everything else, it is time to ‘watch and pray,’ and, when necessary, take action.

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