"How could they do this to us?" asked Connie Yates when she learnt that the UK Supreme Court would not intervene to allow her terminally ill son, Charlie Gard, to undergo experimental medical treatment in the US in an attempt to prolong his life.
Yesterday, Yates's legal battle, and that of her partner Chris Gard, came to an end when the European Court of Human Rights (ECHR) refused to hear their appeal. This means that Charlie Gard will now receive only palliative care, as recommended by his doctors.
Siding with the UK courts, the ECHR ultimately deferred to the UK judgement, saying it was "not for [this] court to substitute itself for competent domestic authorities." There was no basis on which to challenge their conclusions, it added, noting the "meticulous and thorough" handling of the case.
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As Yates and Gard tried to come to terms with the ruling, its outcome reignited a simmering debate about who should have the final say when it comes to the wellbeing of children: the parents or the state.
What does the law say?
All birth mothers – as well as married or certified fathers – have parental responsibility for their child, enabling them to make decisions on their child's behalf. However, English law dictates that a child's welfare is "paramount" and that any decision taken must therefore be in a child's "best interests".
In the case of Charlie Gard, doctors believed that his best interests demanded a dignified death, rather than prolonging a poor quality of life arising from a terminal medical condition – one in which Charlie cannot see, hear, cry or swallow. His parents, however, disagreed. For them, his best interests required one last attempt at experimental treatment in the US. This conflict is what enabled a court to intervene as the final adjudicator.
Parents do have a human right to 'family life', enshrined in the European Convention on Human Rights, but cases have confirmed that a child's interests will always prevail.
For parents and parents alone
The notion that a distant judge, rather than loving parents, has the final say about what action is in a child's best interests is a controversial one.
Speaking before the Supreme Court, Richard Gordon QC – the lawyer acting for Gard and Yates – claimed that parental responsibility was being eroded. "We say there's a boundary beyond which the state cannot simply go without the strongest justification," he argued, adding that the hospital was effectively "mandat[ing a] child's death before it might otherwise come to an end."
This argument appears to have struck a chord with the public, with more than 83,000 people donating more than £1.3m to help pay for the cost of the US treatment, reports The Guardian.
One family supporter told the paper "we should listen to the parents in this country rather than looking down our nose at them. They are the ones who spend all their time with the child.”
So why allow judges to intervene?
Ironically judges may intervene because parents are deemed to be too close and therefore inclined to make an emotive, rather than an objective, decision.
When handing down the judgement of the Supreme Court, Lady Hale reasoned "[These are] devoted parents who are desperate to explore every possible way of preserving the life of their gravely ill but much loved baby son. As parents we would all want to do the same...however, as judges, and not as parents, we are concerned only with the legal position [and] are bound to accept the factual findings of the trial judge...that further treatment would be futile."
Acting for Great Ormond Street Hospital, where Charlie is receiving care, Katie Gollop QC argued that while parents are desperate to ensure nothing remains undone, every child must have "a voice".
In the Gard case, this meant giving weight to the court-appointed guardian, who agreed with the hospital that sending Charlie to the US was contrary to his best interests.
Gollop argued against a situation where "the parents are deemed to be … the sole and only determiner of what can happen. [That's] dangerous and it's power without end", she added.
Do both parties have an equal voice?
Writing in The Guardian, Anne Perkins argues that where the court has to intervene – and a judge is tasked with hearing conflicting opinions about what course of action is in a child's best interests – it is only right that the views of all parties are adequately represented.
It is therefore "extraordinary", she argues, that Yates and Gard had to rely on lawyers' goodwill – the couple were represented on a pro bono basis because they were not eligible for legal aid. This echoes the opinion of the trial judge, who labelled it a "remarkable" funding decision given the odds at stake.
Perkins argues that legal funding must become more accessible, otherwise "the state is skewing the balance of justice in its own interests".
An ongoing dilemma
The courts' intervention in the case of Charlie Gard follows a string of other high-profile cases, including the death of "Baby OT", whose ventilator was turned off in 2009 following a lengthy legal battle by his parents, and the fate of conjoined twins Mary and Jodie, whose separation in 2002 knowingly resulted in the death of Mary.
The outcome in these cases differs to that of Charlotte Wyatt. Her parents successfully fought against a non-resuscitation order, which saw Charlotte outlive doctors' prognoses by several years. The story, cited by Yates and Gard, demonstrates the ethical dilemmas facing the courts.
With medical advances making it easier to prolong life, there appear to be no easy answers to these dilemmas. The law's role is to regulate parents' unenviable choice between a child's death and their ongoing suffering.
