‘A system intent on piling more hurt upon a delicate but already bruised baby’

Monica White’s nine year old daughter Olivia can’t walk or talk and has severe spinal curvature. She can’t get on a waiting list until deemed to require surgery — for which she needs an MRI. She’s been offered a date of April 2019. She’s currently in hospital. In today’s Irish Examiner, Monica says her daughter can’t afford to wait.

‘A system intent on piling more hurt upon a delicate but already bruised baby’

Monica White’s nine year old daughter Olivia can’t walk or talk and has severe spinal curvature. She can’t get on a waiting list until deemed to require surgery — for which she needs an MRI. She’s been offered a date of April 2019. She’s currently in hospital. In today’s Irish Examiner, Monica says her daughter can’t afford to wait.

With the impending abortion referendum looming, I find myself, like countless other mothers in this country pondering issues that are, in my personal situation, more of an absolute priority.

I do not in any way wish to diminish the crucial discussion and debate that dominates the headlines because it is a discourse that is essential in forging the path our country and its citizens will take.

It will shape the future of law-making and legislation and will have far reaching consequences, be they good or bad, for our children and their children’s children.

However, because I find myself in circumstances that are rapidly spinning out of my control, my child and her health and quality of life are being essentially ignored by this Government and its elected representatives.

At the same time, they frantically orchestrate any opportunity to make shallow and false promises, offering mere lip-service, more concerned about maintaining their lofty positions and salaries than dealing with “little people” like you and me.

Well, not on my watch. To expose myself to the media and public opinion is not something I relish or desire but you know, ‘needs must’, and as a devoted and loving mother, I’m up for the fight.

Unfortunately, the climate we live in compels innumerable parents like me to steel ourselves for the fight.

It forces us to compromise the privacy and dignity of our vulnerable children and make a personal story fair game for the public.

If I was sick and vulnerable, I would not wish my story to be media fodder.

I would like the doctor to close the curtains around my hospital bed and tell me sensitively and with great empathy his/her expert opinion on my prognosis.

But as the mother of a disabled child in this country, it has become de rigueur to throw back those curtains, shout it from the rooftops, perhaps monopolise the well-meaning but misguided pity in the desperate hope that the inequity, injustice and absence of fair-play prompts somebody, somewhere to sit up and take notice.

This is not my story. It is a convoluted, traumatic and shocking story, by any standards. Yet it is a very beautiful story because the protagonist in this plot is the most divine, cute, unblemished, perfect winsome little girl. The girl is Olivia. This is Olivia’s story.

Olivia was born on April 24, 2009, at the CUH, Cork. She was a healthy weight and passed her first test with flying colours.

With a shock of black hair in a distinctly mohawk style she was as cute as a button and was the salve to my shattered heart after a very traumatic pregnancy.

Her older sister had been finally diagnosed to be profoundly deaf when I was expecting Olivia and a huge battle ensued between us and the HSE which culminated in us taking her to London to be fitted with a cochlear implant in a private hospital (another long story).

Unfortunately her father Mark couldn’t be at the birth as he was in London with Hannah for the turning on of her implant. However, they flew in that night and he took her tenderly in his strong and loving hands and promised her a wonderful life full of love and whispered all the little things all dad’s whisper into the pink and squishy ear of their newborn.

Mark White with his daughter Olivia, who has Rett’s Syndrome. She cannot walk or talk and has no functional use of her hands.
Mark White with his daughter Olivia, who has Rett’s Syndrome. She cannot walk or talk and has no functional use of her hands.

She came home and she proved to be a calm and placid little baby. Wrapped in a cocoon of unfettered joy, bubble-wrapped with hopes and dreams and the real meaning of life, we all got on about our business.

Sometime after that, the gnawing doubts crept in uninvited, milestones became forensic tests and we found ourselves awake through the night ever before Olivia’s hunger pangs kicked in.

The mind is a mysterious instrument and the constant wondering and praying and trying to concentrate on the positives and avoiding being overwhelmed by the negatives that constantly lurk in the unexplored, darker caverns of your mind.

Our world as we knew it came crashing around us on December 9, 2009, when we were informed by the consultant paediatricians that Olivia had MetaChromaticLeukodystrophy (MLD) — an horrendously, ugly, devastating, terminal disorder.

The image of Olivia’s dad Mark googling MLD on that day, those same big, tender hands that had just so recently lovingly cradled his beloved baby were now visibly unsteady and strangely limp as he read the cruel fate of his child from a cold computer screen.

The fat, salty tears that fell unbidden on the keyboard, falling from the face of such an honest, uncomplicated and devoted father, created an image that remained etched on my mind for years to come.

The reaction to receiving this news about your child is visceral. Your legs do actually turn to jelly, your heart thumps so hard, you have to hold it because you think it’s going to burst out of your chest cavity.

Your innards somersault around your body and that same heart feels as if some monstrous element has forcibly ripped it beating and healthy out of you, shredded it savagely and violently into a million pieces, and stamped and danced on any part of it that shows any sign of pulsating life.

But, believe it or not, we survived. We muddled through those dark days in a haze, trying to be brave for all of our children — the proverbial performing monkeys, busy making memories and bringing a sense of normalcy that could never be.

Nightfall was welcomed because you could talk and fret and cry and rail at the gods for doing this to our beautiful Olivia.

But astonishingly, the spirit was crushed but not broken. I believe we all have inner reserves we are not even aware of. These reserves are only called upon in the face of seemingly unbearable adversity and somehow an inner strength forces you to dig down deep — so deep into your soul and there you’ll find them.

Seven months after that, at a routine appointment, a paediatric consultant informed me that Olivia did not have MLD. Despite the fact her blood tests had been sent to Germany and the UK, they had somehow made a mistake.

I was thunder-struck. I felt no anger or rage, just unadulterated joy. I asked him what her condition was and he said they had no idea and they were working on trying to figure it out.

In spite of those shadows hanging around backstage, I figured we had been given the worst possible diagnosis and therefore nothing could be worse. That evening was the happiest of our lives.

We had been thrown a lifeline and we were all hanging on with both hands. Olivia was somewhat bemused as we danced with her around the kitchen and celebrated our lottery win like we never celebrated before.

On December 9, 2010, I was informed that Olivia has Rett’s syndrome.

She cannot walk or talk. She has no functional use of her hands and is fully dependent on us for even the most basic tasks.

Despite this, she is incredibly communicative. She is always smiling and giggling and babbling those little meaningless yet magical sounds. Her eyes are her stand-out feature — deep green in colour and encased in the longest black eyelashes.

Those same eyes hold your gaze, study your face and there is an inexplicable knowingness in them. Her skin is white and her cupid’s bow lips a vivid pink.

She is the picture of health and in spite of a serious life-threatening setback last year, she has thrived and become more robust with the passing of time.

However, Olivia has postural scoliosis and a curve that started out at 13 degrees has rapidly increased in a relatively short space of time to its current 70-plus degrees.

This continues to impact her quality of life and threaten to cruelly rob her of one of the very few things she can do.

She loves people. She loves the world around her — the sights, the sounds, the colour, the music (‘Slow Hands’ by Niall Horan remains a favourite. Happy Birthday ranks up there too and she’s not fussy about the artist).

She loves the rough and tumble of a busy household and three older sisters who have loved her unconditionally since day one.

Olivia is very communicative, loves people, and the world around her, as well as the rough and tumble of a busy household and her three older sisters.
Olivia is very communicative, loves people, and the world around her, as well as the rough and tumble of a busy household and her three older sisters.

She simply loves being in the thick of it. That sadly may be coming to a sudden end. She urgently needs intervention to straighten her spine, to scaffold it in the short term until a more long term and permanent spinal fusion needs to be performed when she reaches adolescence.

Her consultant, Pat Kiely, has strongly recommended this. He has been Olivia’s “spine guy” since she was a tot. He is a super, can-do, no-nonsense kind of doctor and a thoroughly decent man to boot.

He is an expert in the field and one I trust. Trust can really be an unsurmountable obstacle with a child like Olivia.

In October 2017, we were told that the operation would be undertaken within three months based on a guarantee given by the Government, on foot of pressure from the media’s highlighting of the scandal that underscores the health service’s response to the shameful neglect of children with scoliosis.

Their collective inertia was exposed and the response was, based on Olivia’s experience, nothing but slick sound-bites and empty platitudes.

Even though he can perform this essential operation, it would appear he is stuck in the same dusty old carriage as us in the rapidly derailing train being driven by Health Minister Simon Harris and the HSE.

We received an email just this week to inform us that Olivia is on a waiting list for an MRI for April 2019. The MRI is only a part of the pre-op shenanigans that must be done before the operation.

So much for the targets laid down by the Government and HSE that no child would be made to wait longer than three months. Like many disabled children, Olivia’s profile dictates that the anaesthetic is the riskiest part of the whole procedure.

As it stands, the operation could be performed in a relatively short time frame thus diminishing that risk somewhat. Additionally, her curve can be corrected and give her the optimum chance for straightening her spine.

Last year, when Olivia contracted pneumonia and a collapsed lung among other complications, it was patently clear that a certain area of one lung is already considerably compromised.

As the curve continues to wreak havoc on her spine, it inevitably will cause all her organs to be constricted and all the ensuing health problems that will certainly lead to.

If the operation is performed within the current parameters laid down by the HSE in Olivia’s case it will be an even riskier, complicated intervention and the outcomes are more likely to be unsatisfactory.

Most worryingly is the fact that a part of Olivia’s condition causes her to have a reduced reaction to pain. Her pain threshold is perhaps higher than other children but that does not mean she doesn’t feel pain.

She winces and cries when she experiences pain and discomfort but perhaps not in the insistent and shrill way that she should. Her cry is just like her, gentle and fragile.

She cannot verbalise that pain but I can and I will. How dare Mr Harris expect parents like us sit quietly and watch our children suffer and deteriorate before our eyes.

Olivia has a medical card but we also pay for private health insurance for her.

Now, Mr Harris, this is directly addressed to you. You accepted a very responsible and privileged role by agreeing to steer the ship of the dysfunctional system we call the HSE.

The cargo of that same ship is bursting at the seams with children like my beloved Olivia. She is dependant on you. You have been afforded the crucial task of making decisions that mean an easier or more difficult life for her.

You are going to recognise the responsibilities that lie on your shoulders. No more than I watch a small leak drip through the ceiling of my kitchen and choose to pretend it’s not happening will I ignore the fact that my child’s spine has taken an uncharted route to a very threatening destination.

I will not wait for the deluge to flood my kitchen and I most certainly WILL NOT wait for my child to deteriorate.

I don’t actually care what the challenges you face in managing a very poorly, sickly system. I demand that you address this challenge in a meaningful way.

I will not be silenced. I will not be a passive bystander as you attempt to force me to allow my beautiful child to be a sacrificial lamb, collateral damage in a ghastly game of roulette.

I will shout. I will scream. I will swallow my pride and dignity and I will ensure that you do what is right.

You will agree that Olivia has suffered enough and I will ensure that you do not preside over a system that appears intent on piling more hurt upon a delicate but already bruised baby.

How vulnerable groups in a particular society are treated is a pretty accurate yard stick of our collective core values. At present, we are falling well below the mark.

I do not blame the HSE for Olivia’s condition. It is not Mr Harris’ fault but. And it, most certainly, is not her fault.

She is the greatest blessing in our life. She teaches us more than we can ever hope to teach her.

She is the antithesis to anything negative in life. She is the living, breathing antidote to the all the bad things that are happening in the world every day.

She is special. She is relevant, and she needs help now.

Enough is indeed enough.

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