Tuesday 23 January 2018

Irish mum on having a child with Cystic Fibrosis: 'Sometimes I want to cry but where's that going to get me?'

Marisa Reidy's five-year-old Hanna has been living with the condition since seven months

Marisa Reidy and her daughter Hannah (5). Photo: Dominick Walsh
Marisa Reidy and her daughter Hannah (5). Photo: Dominick Walsh

Marisa Reidy

Every day for the past week I've been woken by the deafening sounds of my daughter coughing incessantly - the sounds coming from her little chest more like those you might expect from an 80-year-old man on 60 cigarettes a day.

However, Hanna is neither 80 nor a smoker - she is just five and has cystic fibrosis (CF). She was diagnosed when she was seven-months-old.

Thankfully the current cough hasn't got so bad that it's keeping her awake at night - something that indicates a serious infection - but the reality is that yet another infection has taken hold and we need to clear it to avoid a two-week hospital stay.

Hanna's last admission was at Easter when, instead of savouring the few days of glorious sunshine that the rest of the country was revelling in, she was cooped up in a hospital room, getting three courses of IV antibiotics every day. She was lucky to get out to the hospital playground for a little while between treatments.

Thankfully though, the Easter Bunny knew where to find her.

So, with this latest infection comes the morning battle with the nebuliser, something to which even the liveliest child would object first thing in the morning. Then some rigorous physiotherapy and blowing exercises to try and clear the offending mucus that's building in her lungs and making her cough - again not the ideal start to a five-year-old's day.

And that's before we even think of breakfast, getting dressed or brushing teeth.

But this has now become the norm in our home, even when Hanna is well. When she's not, the nebulisers and physio sessions are intensified from twice to at least three or four times a day.

Before we hit the road, Hanna takes both antibiotics that have been prescribed by her CF specialist - the first of two doses that she takes every day for two weeks. After that, we'll just have to wait and see if more are needed.

On top of that there's her daily dose of oral vitamins, enzymes and probiotics - again, something she will need to do for life, not just when she's sick.

Despite everything, I count myself lucky that she's a little trooper, God bless her, and is getting old enough to understand why all this fuss and commotion is necessary every day. However, that doesn't mean she does it willingly all the time.

As each day passes, I listen intently for every cough - hoping, praying and willing her to sound better. But then, I'm woken by that heartbreaking sound again and my heart sinks.

Truthfully, I want to cry but where's that going to get me? Instead, I get up, go to her bedroom with a smile on my face and start the process all over again. Maybe tomorrow will be better.

It's par for the course with cystic fibrosis and as parents - just like with all illnesses - you do whatever is in your power to keep your child healthy. That's our job, right?

It's hard then to articulate how infuriating it is to learn of the shameful situation that is currently unfolding at Cork University Hospital (CUH), where management are saying that they now don't have the personnel to staff a dedicated cystic fibrosis unit for adults, which was funded entirely by Castleisland-based charity Build4iLife to the tune of €2.3m.

Is this some kind of sick joke?

Hospital management, the HSE and our health minister should be utterly ashamed at their handling of the situation.

For four years, this unit was being planned and only now management have suddenly realised they cannot staff it. Are you absolutely kidding me?

Interestingly, this isn't the first time the charity and CUH have locked horns over this project. Back in January Build4Life founder Joe Browne refused to hand over the €2.3 million for Ward 5B after management reneged on a commitment to set aside eight, single-bed rooms solely for CF patients - a specific condition on which Build4Life agreed to foot the entire bill for the respiratory ward in the first place.

While that issue was eventually resolved, Build4Life now finds itself up against another stumbling block when all it wants to do is open this unit once and for all.

By saying they don't have the staff, CUH management and the HSE are pretty much saying 'too bad' to every CF patient crying out for the facility. That's despite the fact that staffing the specialised unit can be the difference between life and death. And that is no exaggeration.

CF patients at CUH are being forced to share public wards with numerous other sick people, risking cross infection every second of every day - the most dangerous threat of all to their health. All the while, a multi-million euro facility gifted to the hospital by a charity lies idle.

So, what happens when one of these CF patients dies before ever getting to see the inside of this life-saving facility - a frightening possibility given that the current life expectancy of a CF patient in Ireland is the mid 30s-40? Are management going to turn around to their family and say 'too bad'?

Charity boss Joe Browne is irate at what has transpired - and rightfully so. Only for him and his loyal supporters - who would fight to the death for their loves ones - there would be no CF unit in Cork. But instead of being rewarded for their gallant efforts, they face challenge after challenge.

Those in power should be falling over themselves to get this unit open, given how much the charity has saved them by footing the entire bill.

This was a done deal and Build4Life has kept its side of the bargain so now it's time for the HSE and CUH management to do the same. If they cannot, then they must be held accountable - end of story.

Given everything that CF sufferers already have to do to try and stay healthy, never, ever will 'too bad' be acceptable. Not on my watch. Not for my daughter. Not for anybody.

And the fact that CUH management, the HSE and our health minister is allowing this to happen, is utterly sinful and makes me ashamed of what this country has become.

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