Friday 17 January 2020

Brendan O'Connor: 'Why we can't continue to rely on the strength of superhuman parents'

The secret tribe of parents of sick children in our over-stretched hospitals were forced out of their shadowy world again last week, writes Brendan O'Connor

Tommy Kinsella (7) has had his surgery cancelled eight times
Tommy Kinsella (7) has had his surgery cancelled eight times
Brendan O'Connor

Brendan O'Connor

There is a tribe in this country. It has many members but they tend to live in the shadows. Lots of us know individual members of the tribe, and now and then one of them will stick their head above the parapet in public and remind us all they are there, living in their parallel universe.

Most of this tribe are medical experts. They all tend to have their own specialism. They have little formal training but it is a hallmark of them that they will all tend to know far more than any one person should know about some specific area of healthcare.

They may be a cardio expert, or a researcher into rare blood diseases. Some of them will have read all the academic work on various experimental treatments for specific conditions of the immune system. Some of them might be among the world's leading experts on a little-known form of cancer.

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They wear their hard-won knowledge lightly. Apart from when they need to fight for their children, you'd barely know how qualified they are in their field.

For many of them, their dedication to their speciality takes over their lives. A lot of them live in this kind of grey area between home and work and a children's hospital.

Indeed, sometimes the work might have to be cut out of the equation. Sometimes the home may suffer, too.

We've all done it for short periods, haven't we? When a child is in hospital, the home is not a home anymore. Parents do shifts at the hospital, so they're never home together. Meals are basic, eaten standing up or grabbed on the run.

The other kids are farmed out to whoever will step in. Home is just a place to land at the end of the day, exhausted from work and hospital - a place to grab some fitful sleep. After a few days of it, it feels like things are coming apart at the seams.

But for some people, this becomes their life for a long time. Indeed, the headachy hospital light and the sickly air can become more familiar to them than home. They sit around for days, weeks, months, worried sick but putting a brave face on things, trying to keep bored, sick children jollied along. And that's if they're lucky, if the child is well enough to be bored, and well enough to need jollying along.

For others, it's a more sporadic thing. They get periods at home. Sometimes this involves turning the home into a quasi-hospital. In these situations, family life will often revolve around the sick child. The other kids will tend to row in with this because the capacity for love in families is immense. In these situations, the other siblings may not have their needs met in the way they might otherwise. And parents don't tend to get to have much of a life either. Date night might not be very common! But people will put up with a lot to have their kid at home.

Then there will be trips to hospital, often up to Dublin if you live down the country. This can obviously be massively disruptive to family life, and can involve considerable expense, organising accommodation in Dublin, pulling in favours, missing work.

There are tens of thousands of families all over the country living variations on this life, some at the shallow end of it, some at the deep end, some slowly drowning. Most of the time, most of them bear it with a grace the rest of us can't imagine. They take in their stride things that would be unimaginable for the rest of us - operations, seeing your child having seizures or trouble breathing, seeing your baby go through all kinds of procedures, with tubes and needles sticking out of them.

These people are heroic in the truest sense. But sometimes, when they find their already unbearable situation being exacerbated by a health system that doesn't work, they find themselves forced, in desperation, to invade their own privacy and to parade their family's business in the media. It's a last resort for people. But sometimes people clearly feel it's the only weapon they have left in their fight against a system that lets them down again and again.

In the grand scheme of these things, Noirin Kinsella is probably one of the luckier ones. Noirin had to see her baby Tommy have heart surgery when he was 11 months, and now, at seven, he needs another heart op. Until he has the operation, Tommy can't go to school, he wears a medical mask, his quality of life is deteriorating. Tommy had his operation postponed again last week, for the eighth time. You can imagine that you might be accepting the first time your child's heart surgery was postponed, maybe even the second, third, fourth or fifth time it happened, maybe even the sixth or seventh. But you can see how the eighth time might tip you over the edge into going on to Facebook and going public.

Ciara Reid went public last week, too. She told Kieran Cuddihy on Newstalk last Friday morning that her four-year-old daughter, Reiltin, is "the funniest child on earth and the strongest child on earth, our absolute little hero". Then she explained how Reiltin has Down syndrome, was born with a congenital bowel defect and needed surgery when she was three days old. Reiltin went into heart failure when she was six-weeks-old and needed open-heart surgery when she was four-and-a-half months old, when she was also diagnosed with obstructive sleep apnoea. At eight months old, Reiltin's family found out she was profoundly deaf and needed to get cochlear implants.

Ciara said the family were just getting back on their feet after Reiltin's second birthday. Ciara was just going back to work after being off for the two years. And then, on the morning of their other daughter Dearbhla's birthday two years ago, they got a call to come to Crumlin immediately. Her husband's initial response was to say: no, we can't, we have a birthday party today.

The world shattered as they were told Reiltin had acute lymphoblastic leukaemia. Instead of being at her sister's party that afternoon, Reiltin started treatment.

Ciara Reid reckons she spent 200 nights in Crumlin in 2018, along with numerous other days that she was in and out for appointments. Last year, she says, was better - only about 50 nights there last year, and maybe another 60 days in and out for appointments and antibiotics.

Reiltin is getting close to the end of her treatment now. But every 12 weeks, she has been going to theatre for a general anaesthetic to have chemo into her spine. Of eight or nine such appointments, Ciara reckons every second one has been cancelled. Last Thursday, when Ciara rang to confirm Friday's appointment, she was told it was cancelled. She was told another child needed to go to theatre, but she was also told it was a capacity issue.

Ciara says the flu may be the excuse this time but she says she's lost count of how many times they've been cancelled for procedures.

In relation to Tommy Kinsella, Ciara told Cuddihy: "We were only cancelled for open-heart surgery once, so we count ourselves quite lucky."

We all accept that there are not unlimited resources for health, and hard choices have to be made. We accept, too, that the State is building a world-class children's hospital which will apparently put an end to situations like Tommy's and Ciara's. And we accept, too, that the majority of people have good outcomes in our health service.

But equally you read that there were 2,000 nursing home beds available last week, and 611 people waiting to be discharged from hospitals, whose discharges would have provided a bed for practically everyone on a trolley. But apparently bureaucracy and delays in accessing funding models prevents discharges from happening quickly.

And you wonder then if the health system is really working to capacity, or could there be a bit more common sense employed. This is a simplistic example, and it wouldn't have helped Tommy and Reiltin, but it does make you wonder if more resources are always the answer, or if there isn't capacity to be tapped within the existing system.

We do know, for example, that theatres and scanners across the public health system aren't always working to the same capacity and hours that they would be in the private sector.

You'd have to ask are there no creative solutions here to help Tommy and Reiltin and their families, and families like them all over the country, help them from having an already hard old station made much worse. We owe these people, who work so hard in situations most of us would find unbearable, more than this.

Most of us would crack under just one of the complications Ciara and Reiltin and the family had to deal with. This is Ciara's grace under pressure: "On my very optimistic days I will say that I'm very lucky. My child is still here and my child is still fighting. We've met too many children who are no longer here."

And how was she feeling last Friday morning when Reiltin was supposed to be off having her spine punctured for chemo? "My children woke up there a few minutes ago and I was listening to them in their bedroom laughing and playing with each other and that's one of the best sounds on earth, listening to your children being happy."

The tribe have great resilience and the ability to find joy where the rest of us might fail. But we cannot continue to rely on these parents to be superhuman, and relying on their grace under pressure. We cannot continue to make life so much harder for them.

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