Friday 26 December 2014

'It's time to celebrate these babies for all the wonderful things they can accomplish'

Baby Eloise, with Roisin and their mum Aedin Collins from Galway. Photo: Andrew Downes
Roisin from Galway
Aedin Collins from Galway

As World Down Syndrome Day approaches, Aedin Collins, proud mum to Roisin, challenges how we view the condition

It is a cold, dreary evening in late November and the harsh, Galway rain has just started to pelt the windows of the hospital. I am warm and snug inside, basking in the glow of one who has just given birth to a healthy baby girl. My French mother-in-law looks aghast as she surveys the packed ward. I know she cannot believe that this is the norm for recovering mothers here in Ireland. In France, a private room with state-of-the-art facilities comes as standard. I am in the middle "cubicle" separated from the other new mums by the flimsiest of curtains. The middle one is the narrowest of the makeshift cubicles; there is barely enough room for any visitor to stand beside my bed and my newborn daughter's cot.

I am delighted to be in these cramped quarters. A nurse who has just started her shift comes by to check on me and offer her congratulations. I am thinking of the last time I was in this hospital, on a gloriously sunny St Patrick's Day two years previously, where I am alone with my newborn in a private room and instead of congratulations from the nurses, all I am receiving are mournful condolences when they come through my door and lay eyes on me and my little girl. I didn't ask for a private room but I've been given one anyway, in an effort to come to terms with the news that my daughter has been born with a chromosomal abnormality.

Getting pregnant was not really part of my life-plan but once the initial shock wore off, both my partner and myself were excited nonetheless when we found out we were expecting.

For me, it was an excitement laced with anxiety – what if something went wrong? My only sibling is profoundly deaf so I have experience of the stress and strife living with disability can bring and as such, I was suitably nervous of the chance of something going awry, but at our 20-week scan, everything is proclaimed to be "normal" and I am told to enjoy the rest of the pregnancy.

Except, everything isn't "normal". Moments after Roisin's birth, as I am gazing adoringly at what I believe to be the most perfect features ever seen on a newborn, a paediatrician is delivering the news to myself and my partner that she suspects Roisin has a genetic defect: Down syndrome to be precise.

Through the foggy haze of childbirth, where the greatest physical pain I have ever experienced has melted away into the greatest feeling of love I have ever felt towards another human being, I am racking my brain for any information I have of Down syndrome. Images of people who are shorter than average with distinct facial features – almond-shaped eyes, a flattened nose, pointed chin, float before me.

The theme tune from 'Life Goes On', an American series from the 80s, which focused on the life of Corky, a teenager with Down syndrome begins to circulate in my brain – the Beatles' 'Obla Di Obla Da'.

Flashes of the satirical cartoon 'South Park'. Another memory surfaces – wasn't there someone with Down syndrome who lived in my parents' estate? I used to see him sometimes on the bus into town. He was only in his late twenties, but he looked so much older. Wait, didn't he die really young?

As my shattered synapses try to fire and load some more information about Down syndrome, I realise I have not said anything for quite a while and an older midwife leans over and asks

"Do you understand?"

I brush off her query with a confident (or as much confidence as I muster at 2am after a pain relief-free labour,) "Yes, of course."

But I don't understand and clearly I know nothing of what this means for me, my partner or our newborn baby. I only know from society that it is a bad thing and this is confirmed by the looks on the faces of the midwives and doctors in the room and the way the paediatrician breaks the news.

She must be mistaken. I am only 29. Aren't babies with Down syndrome only born to older mothers? As it transpires, this is just another misconception I have about the condition – as it is a random genetic mutation, it can occur at any age.

First we must undergo a nerve-racking ultrasound on her heart. Some 47pc of children born with Down syndrome have a congenital heart defect.

Thankfully, Roisin is not one of them. She is not feeding well, however, and that coupled with a bout of newborn jaundice means she must spend some time in an incubator with a feeding tube placed through her nose into her stomach. It means we can only hold her for a limited time every day.

I come to the neo-natal unit every four hours to pump breast milk and cuddle my baby. It is a strange sensation to leave the hospital every night without her. We are told she may be here for weeks. She surprises the hospital staff, however, by both acquiring the knack for feeding and shaking off the jaundice much quicker than they expected and six days later, she is released home to us.

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