Tuesday 20 February 2018

To any parent watching, this farce looks like the cruellest form of torture

Claire Cahill and her son Darragh who featured in the RTE Investigates programme. Photo: RTÉ
Claire Cahill and her son Darragh who featured in the RTE Investigates programme. Photo: RTÉ
Nicola Anderson

Nicola Anderson

How much suffering is a child expected to endure before it is deemed to be enough? Is it when a seven-year-old boy comes home from school and goes off on his own into the sitting room, crying his eyes out from the pain in his tummy?

Is it when the metal rod has pried loose from the spine of a 13-year-old girl and is poking through her skin, the wound infected and patched up with a collection of bandages?

Or has the appropriate level of suffering been reached when a 13-year-old child is forced to skip her Christmas tests because she has missed so much school this term and cries because she feels "it's somehow my fault"?

Perhaps the authorities might intervene when the child has grown pale and wan from too many sleepless nights and a suppressed appetite but remains heartbreakingly brave all the while?

Or maybe it is when a terrified mother decides to speak out just in case anything happens to her child and at least she can tell herself that she tried?

Then, to be sure, the authorities might declare "enough".

Read more: Scoliosis theatre 'to open in April and 194 spinal procedures to be carried out this year' - Heath Minister

"It's very hard to sit back and watch your child suffer and there's not a damned thing you can do to help her and you have to fight every step of the way," said one of the parents interviewed for the RTÉ Investigates programme on waiting lists.

It was impossible to watch the programme without being provoked into helpless shame, sorrow and fury as it outlined the daily agony being endured by children and their families awaiting medical procedures for scoliosis or curvature of the spine.

As a parent, you rejoice in the visible growth of your child made tangible by the tracksuits or trousers so rapidly outgrown.

But for these parents, such growth is deeply troubling because it means necessary operations are graduating inevitably into critical ones as their young children's spines contort out of shape.

As a parent, too, you are reassured that if your child is in pain and a diagnosis of something 'fixable' is made, that it is only a matter of time before all will be well again.

Nobody warns you to expect an endless waiting list while your child's condition deteriorates before your eyes.

For the mother of little Darragh Cahill (7), from Co Kilkenny, to realise that she had spent eight months thinking that her son was on the list when a 'human error' meant he had only just been added was catastrophic.

Read more: 'I fear he'll have no quality of life' –Mum whose son suffers from severe scoliosis told to wait 18 months for hospital follow-up

As new parents, even the pain endured by an exhausted, squalling teething baby can readily cause tears to rise as we reach the end of our tether.

Do the authorities really expect the parents of a child suffering from a serious ongoing medical condition to sit powerlessly by for many months, or even years, to await the moment when they are considered to have reached the 'top of the list'?

Reaching the top of the list is bureaucrat red-tape speak for being deemed to have 'suffered enough'. And yet, as witnessed, sometimes 'enough' is never enough - and the suffering continues.

In any other setting, what is currently happening in our health system would be considered the cruellest form of torture on our most vulnerable citizens.

But in modern Irish society, this situation is merely the political headache of 'waiting lists'.

Money lies at the root of it - and yet we squander millions on far less.

To a human being, this is an impossible equation to square. To a parent, it is a sickening cruelty that cannot be endured. And yet for thousands, it must.

"I feel like getting sick," said Meghan Halvey-Ryan (13) as she described the pain caused just by carrying her schoolbag.

We watched as Darragh wheezed and struggled to breathe in his sleep at night, his little lungs compressed by his twisting spine.

"It's like someone keeps hitting your back," said a fearful Kira Carberry (13) as her mother told how the steel pin in her spine had broken away.

Even Taoiseach Enda Kenny, a parent of three, admitted he found it "difficult to watch".

"The stories speak for themselves.

"This is 2017 and no one wants to see a situation like this," he said.

It is surely time, then, to finally end this suffering.

Irish Independent

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