Politicizing a parent's worst nightmare

A couple faces off in court over whether their gravely ill son should live or die. Is this a "right-to-life" issue?

Published November 3, 2009 2:04PM (EST)

In Britain this week, a mother and father are squaring off in court. Although the couple is "amicably separated," their dispute has nothing to do with alimony or child custody. Their legal teams are battling over something much more difficult: whether the parents' 1-year-old son should live or die.

Over the weekend, the Times of London broke the story of two young parents who disagree on what the future should hold for their severely disabled child. Known in the press as Baby RB, for reasons of anonymity, the boy suffers from congenital myasthenic syndrome, "a rare genetic fault meaning his muscles are too weak for him to move his limbs effectively or breathe unaided." There is no cure for his illness, which has forced him to spend his entire life in the hospital and renders him unable to "move his limbs effectively or breathe unaided." Because he can't swallow, the boy must also endure painful lung-suction treatments every few hours.

Now, doctors recommend removing Baby RB from his ventilator, which would cause him to die. His mother agrees with the hospital, arguing that her son deserves a "peaceful, calm and dignified death," to end his "intolerable suffering." But his father wants the boy to undergo a tracheostomy, which the Times describes as "an operation in which an opening is cut in the neck to deliver oxygen to the lungs." The procedure, he believes, would finally allow Baby RB to come home -- despite testimony Tuesday morning from a pediatric intensive care consultant who says the child "was 'not a candidate' for tracheostomy." The doctor told the court, "This is not an existence that most families want for their children."

From a legal standpoint, this may be a landmark case. "If the hospital is successful," the Times reports, "it will be the first time a British court has ruled life support can be withdrawn for a child not suffering brain damage, against the will of a parent." There does, however, seem to be some disagreement over whether Baby RB's condition has affected his cognitive development. On Sunday, the Times claimed, "His brain has not been affected, and he can see and hear; he enjoys being read stories." But in court Monday, the Guardian reports, pediatrician Dr. David Roberts, "who has visited RB and studied video footage of his daily life, said that while he possessed 'cognitive ability', it was hard to gauge his developmental progress objectively." The doctor told the court that the boy's reactions didn't vary when he was faced with a stranger, as opposed to his own parents -- a telltale sign that all might not be well with Baby RB's brain function. 

Of course, the British press is all over the case, and everyone has an opinion. Unsurprisingly, British anti-choice groups are spinning the case as a "right-to-life" issue. In a press release, Anthony Ozimic of the Society for the Protection of Unborn Children had this to say:

Whenever there is doubt about life-sustaining medical treatment, everyone should act with a presumption in favour of life. The value of a person's life, and the protection due to that life, should never be judged according to opinions about the person's quality of life. An ill or disabled person's life should never be regarded as not worth living. Doctors should not confuse the possible burdens of a medical intervention with the priceless worth of a person's life.

The Telegraph's religion editor, George Pitcher, is sympathetic to both parents' plight, framing the decision as a question of whether attempts to save the child would do any good: 

As far as the nursing staff who care for Baby RB are concerned, it’s worth pointing out that our medical profession never deliberately kills anyone. It withdraws medication and treatment when it is deemed to be futile. That’s what Baby RP’s [sic] case has to decide, not whether his life is worth any less than those of the rest of us. For all the other failings in our health service, that’s a principle of which we should be proud and which is worth defending.

While I understand where Pitcher is coming from, I do think it's important to take into account the likelihood that Baby RB's life will entail nothing more than suffering. Must we only deem attempts to save a child "futile" when it's clear he will die? Or is it also "futile" to keep the boy on his ventilator when it's likely that keeping him alive will doom him to an entire life spent in the hospital, enduring constant pain?

Whatever happens to Baby RB (and I don't feel qualified to render an opinion on that), one thing is clear to me: This case shouldn't be about political leverage or who is a better parent. As the Guardian mentions, the mother and father are both described as "utterly devoted parents" who visit their child in the hospital daily. It's clear that both are hurting, deeply. However the judge decides, the story of Baby RB will be a tragedy for everyone involved.

By Judy Berman

Judy Berman is a writer and editor in Brooklyn. She is a regular contributor to Salon's Broadsheet.

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