Fintan O’Toole: What is this country if it allows torment of children with scoliosis?

Sometimes words really do fail us. There are truths that can be articulated only in a heart-wrenching sigh.

We heard that sound last week on RTÉ radio when Christine Terry was talking to Brian O'Connell about the torture her 10-year-old son, Adam, is enduring because he cannot get the treatment he needs for his scoliosis.

She had just used three words that are almost too painful to listen to, never mind to say about one’s own child: bone on bone. That’s what’s happened to Adam now: his spine has been allowed to curve so badly that it is crushing against his chest cavity. Bone on bone.

She went on: “This country has completely… aaah.” She could not say more. What this country is, what it has done and not done, is, for these children and their parents, unspeakable.

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And yet we force them, over and over again, to try to describe what we put them through. O’Connell’s report on Adam was actually his second one – the same story had been told a year before.

To suffer is not enough – the victims have to talk about it, repeatedly, on the airwaves. Their last resort – sometimes it seems their only resort – is to cry for Aaahland. Christine rightly said that being forced to do all this in public is “disgusting”.

Excruciating pain

It was Adam last week. But before that, it was Sophie, Megan, Kira, Darragh, child after child. Year after year, as long as I remember, there has been a kid with scoliosis in excruciating pain, waiting, getting worse, getting so bad that he or she has no choice but to abandon privacy and put themselves on display.

We make a show of ourselves by forcing children and parents to make a show of themselves. But the show goes on. This performance of pain is perennial.

Four years ago, an Irish doctor was quoted in the Dáil as saying that foreign specialists were coming here to study these kids because it is so rare elsewhere to see a child whose scoliosis has been allowed to get so bad.

Four years ago, too, in December 2017, Leo Varadkar, who was then taoiseach, said something unusually personal and revealing in the Dáil. He recalled a moment when he was studying medicine at Trinity College Dublin – probably therefore around 20 years ago.

How can we have a once-and-future taoiseach who has made it his personal mission to stop this bone-on-bone agony, and yet it does not stop?

“When I was a medical student, I remember seeing kids [with scoliosis] who were waiting on operations, whose lung function was getting worse by the day, and by the month, because of the delays in getting treatment. I vowed to myself that if I ever had the privilege to hold political office, to be minister for health or taoiseach, I would try to do something about this.”

There is no reason to doubt the sincerity of this resolution. In fact, there is every reason to believe it, for what sentient being, seeing a child suffer so awfully and so unnecessarily, would not say: if I ever get the power to stop this, I will do it?

Inescapably human

This impulse is not political or ideological; it is visceral and emotional. The imperative is merely and inescapably human. And yet, Varadkar has been both minister for health and taoiseach and his vow to himself is unfulfilled.

That same year, after another RTÉ exposé, then minister for health Simon Harris told the Dáil "we will have a priority initiative on scoliosis as part of the HSE 2017 waiting-list action plan with the aim of every child being treated within the clinical timeframe".

The clinical timeframe is four months. According to the HSE, “The Action Plan for Scoliosis 2017 set out to ensure that no patient would be waiting more than four months for surgery by the end of 2017.”

Yet children are still waiting years for operations. The pandemic and the cyberattack on the HSE have undoubtedly made things worse, but they are not the cause of the problem. It long predates them.

It is not even really a question of money. On the contrary, the delays in treating these children make their conditions progressively worse and therefore harder – and more expensive – to treat. We waste a lot of money allowing these young bodies to be tortured.

How can we have a once-and-future taoiseach who has made it his personal mission to stop this bone-on-bone agony, and yet it does not stop? How can each of us listen, again and again, to these cries of anguish and despair and forget about them until the next time?

Incomprehension

From the bottom of the barrel, which is where Adam says he feels he is, the only answer to these questions is that aaah of grief and distress and incomprehension.

But the rest of us can’t leave it there. We have to start Christine’s sentence again: “This country…” And we have to fill in that shameful blank. What is this country if it allows such torment to continue?

We have to fill the void that yawns between our basic human instincts of compassion on the one side and our State’s ability to behave decently on the other. Otherwise, we are merely voyeurs of other peoples’ suffering who, in Seamus Heaney’s phrase, “connive/ in civilised outrage”.