The baby who became a political football

“It’s not over”: Charlie’s parents have vowed to keep fighting for their son’s health. © Getty

The heartrending case of Charlie Gard, a terminally ill baby, has gripped the world. His parents are pressing for experimental treatment; his doctors say no cure is possible. Who is right?

When Charlie Gard was born, his parents believed he was perfectly healthy.

Eight weeks later, his health began to decline. His parents, Chris Gard and Connie Yates, took him into hospital. He has not been home since.

Charlie was diagnosed with an exceptionally rare genetic condition called encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). and he was soon placed on a ventilator to help him breathe.

Now he has severe brain damage. He cannot open his eyes or move his arms and legs.

He is now at Great Ormond Street Hospital. Doctors there say there is no accepted cure for Charlie’s condition, and that his life support should be switched off and he should be allowed to die.

But Charlie’s parents want him to have an experimental treatment called nucleoside therapy. A hospital in the US has agreed to offer Charlie the treatment, and Charlie’s parents have raised funds to take him there. Nucleoside is a treatment, rather than a cure.

Last month Charlie’s parents lost their fight at the Supreme Court to have him transferred to America. But yesterday the trial returned to court to discuss “whether there remains any prospect of any meaningful life”.

Yesterday, the judge said it would take “something drastic” to change his mind.

The parents’ plea has been supported by the Pope and Donald Trump.

At its heart, this is a debate about parents versus doctors. Who is best placed to decide a child’s fate?

Writing in The Daily Mail, Rachel Johnson draws on her own experience of having a gravely ill child. She writes “I was not the right person to take rational decisions. I was deranged – with love and terror.”

Elisha Whiteman, meanwhile, sides with the parents. In The New York Times, she writes that it is the child’s interests that matter. And parents will inevitably feel that more strongly than a doctor, who is likely to see the child as “just another patient”.

Charlie’s parents believe they have a “10% chance” of saving him. Should they be allowed to decide his fate?

Right to life?

“Society must not shun its experts”, writes Gaby Hinsliff in The Guardian. Everyone can sympathise with the turmoil Charlie’s parents are enduring, but his doctors have made it clear that, not only is treatment futile, but it will actually cause him more pain. This legal framework exists to protect children. It should not be lightly cast aside.

“What kind of a nation would kill a baby in his mother’s arms?”, writes Todd Starnes for Fox News. Charlie’s parents want one last shot at treating him, and are being blocked from doing so by official bureaucracy. Charlie’s parents brought him into the world. It should be up to them to accept that his time has come.

You Decide

  1. Who should decide Charlie Gard’s future: his parents or his doctors?
  2. Is it right for world figures like Donald Trump and the Pope to express their opinions on a case like this?

Activities

  1. Class debate: “Doctors should be able to perform any treatment or operations without the patient’s or their parents’ full consent.”
  2. Write a letter to the judge overseeing this case, explaining which side you think he should side with.

Some People Say...

“Trust in experts can only get you so far.”

What do you think?

Q & A

What do we know?
That 11 month-old Charlie Gard is terminally ill with an incredibly rare disease. There is almost no chance of him ever recovering. But there is a highly experimental treatment available in the US, which Charlie’s parents say has a “10% chance” of helping. A court moved to block the parents from taking their son to the US, but the case is now back in the Supreme Court.
What do we not know?
Whether Charlie’s parents will be successful in their renewed bid to get him treated in America. Yesterday a lawyer for Great Ormond Street Hospital dismissed claims that there was “fresh medical evidence” to reverse the decision, but there is a chance that the campaign behind Charlie might have a telling effect.

Word Watch

Exceptionally rare
Charlie is thought to be one of 16 children in the world to have mitochondrial depletion syndrome. The condition causes progressive muscle weakness and brain damage because he is unable to get energy to his organs.
Great Ormond Street Hospital
Located in Central London, GOSH is one of the world’s leading children’s hospitals.
Nucleoside
It has been used on some patients, but none with Charlie’s type of MDDS. There have not yet been any trials in mice to see if it would work in Charlie’s condition, which is caused by a mutation of a gene called RRM2B. Doctors say it does not look as though there will be time to run such tests before reaching a decision about Charlie’s care.
Donald Trump
The president tweeted: “If we can help little , as per our friends in the U.K. and the Pope, we would be delighted to do so.”
Rachel Johnson
A British journalist and television presenter who is the sister of foreign secretary Boris Johnson.