Caring for Special Babies & Children/Adults
Support Organisation for Trisomy 13/18 - (Patau's/Edward's Syndrome)


Martina and Frank O’Reilly
Louise 31/08/89 (D)
Edward’s Syndrome


In 1989, our only daughter, Louise died. In many ways it seems like only yesterday and in other ways it all seems more like a nightmare we dreamt – many years ago.
Frank and I were living in London – we had our first home together, jobs we both loved, lots of new friends and the most important thing in the world to us – we were expecting our first baby. The pregnancy had its little ups and downs – nothing major – but I must admit I was concerned that I had a very small ‘bump’ – I never really needed to wear maternity clothes. Everybody (including doctors) assured me things were progressing well – and there was nothing to worry about.

However at 33 weeks during a routine ante-natal check up, a Doctor casually mentioned the baby was small for dates! From that moment on the alarm bells rang. I was scanned and rescanned – I just knew from the faces around me, the half nods and whispers that something was terribly wrong. They picked up a ‘heart problem’ – which was confirmed the next day by a more precise foetal heart scan at Guys Hospital. I was given the news every mother dreads – my baby’s heart had a large septal wall defect and one side of the heart had not developed. She was unlikely to survive a labour with such problems – let alone live independently for any length of time. My baby was going to die.

The next few days were a blur – I cried for hours on end. We were devastated. For the first time in our lives we were heartbroken. A Genetic Counsellor confirmed later that week that Louise also had Edward’s Syndrome. As I had worked for a time as a student nurse with ‘special needs’ children – I knew the prognosis was poor. It was agreed I would be induced at 37 weeks – this would give me the best possible chance of seeing my baby alive, but I was warned it was quite likely Louise would be stillborn.

I had 4 weeks left with Louise: 4 weeks to steer our lives down a new path, to pack away her pram, her tiny clothes and her cuddly toys, to arrange her funeral and to somehow muster up the courage to face what lay ahead.

On August 31st – as I walked from my room down the cold silent corridors to the labour ward I never felt so totally afraid and alone in my life – it must be a similar feeling walking to your execution, knowing the end is so near and totally out of your control.

Louise was born later that day – and I could not believe how beautiful she looked. She weighed 3lb 10oz and she had a head of black hair. Myself and Frank held her and took photographs – we laughed when she yawned and stretched her arms out in front of herself. I suppose we heard so much about her abnormalities we were delighted with any normal thing she did. Sadly, Louise died in my arms two and a half hours later.

I went home that night and I was amazed that the world was still carrying on as normal – because for us our world had stopped revolving. We felt our future had died, she was part of so many hopes and dreams and now they would never be. We found it hard to believe we would ever be happy again. I physically ached to hold her. I could not bear to look at a baby girl – I often ran hysterically from shops if I saw a pram that even looked like Louise’s. The worse thing was when somebody asked if we had any children – what do you say…..?

The years since Louise’s death have been tinged with the sadness of her birthdays, the day she should have started school, made her First Communion, started Secondary School. We worried during my subsequent pregnancies and were incredibly happy and relieved at the birth of our sons Andrew and Robert.

A day does not pass when I do not think of Louise and what she would be like now. Andrew and Robert talk about her as though she is just somewhere else – which gives me hope that some day we will meet Louise again.

Her life may have been short – but her impact was immense.

Martina O Reilly