My mam explained the gift of life

MY HEALTH EXPERIENCE:I am so proud of my mother for being an organ donor

I STILL remember the day my mother asked me to carry an organ donor card. We were standing in the kitchen beside the sink having a chat and the subject came up. I was about 16 years old. I think initially I said no – I thought the whole thing sounded a bit gory. My mam explained how important it was – it was the gift of life. Ever since then I have carried a donor card and have that little box ticked on my driver’s licence.

Last year, one afternoon our lives changed forever in a split second. My lovely mam had a catastrophic brain haemorrhage. She was 57 and in perfect health. She was taken to hospital that afternoon and transferred to the intensive care unit in Beaumont Hospital that night.

We found out later that she had another massive brain haemorrhage on her way in the ambulance. There was never any real hope and I realise that now, a year later.

The following two days were horrific. It really was like living through a nightmare. But none of it felt real because things like this didn’t happen to us. They happened to other families – strangers.

I remember myself and my sister being taken into a private room to speak with the consultant. I remember seeing his mouth move but not really hearing what he said. I heard some words. Words like “devastating”, “not responding”, “another bleed on the brain”, “Grade 5” but I couldn’t understand why he was using words like these when he was talking about my mother. It felt like my eardrums were broken. It didn’t matter how many times I was told over the next 18 hours, I simply couldn’t take it all in.

I remember the shock being so physical – I couldn’t eat, I had a constant headache. The actual pain of my broken heart when I looked at my mam hooked up to life support.

Machines were keeping her alive, keeping her warm. I remember holding her hand and whispering to her that she’d better pull through because what the hell were we all going to do without her? She kept us all together – my dad, my two younger sisters and I. She was the one who taught me how to be a mother. My two girls adored her. How was I going to tell them that their beloved nanny wasn’t coming home? It was going to break their hearts and it did.

In the midst of all this shock, pain and confusion the hospital raised the subject of organ donation with my dad. He held a family meeting. We all knew what my mam wanted so it should have been an easy decision to make.

But it wasn’t. Did we really want to put her through an operation after having a seizure, two haemorrhages and being on life support? Hadn’t she been through enough these past couple of days? We all had an overwhelming desire to protect her, to mind her. The doctors told us she wouldn’t need an anaesthetic because she couldn’t feel anything. Can you imagine saying yes to an operation for someone you love when they weren’t going to be given an anaesthetic?

I understand now why she didn’t need one but at the time I didn’t. I was so worried she would be in pain and we would have been the cause of it.

When someone dies in the movies we’re all familiar with the scenes – the family gather around the bed and life support is switched off. It’s not like that if you agree to organ donation. At a time of such confusion and shock it’s disorientating when your only reference point is taken away. What actually happened was a wait of seven hours while the hospital contacted the recipients and cleared theatre. Seven tormenting, miserable hours. We were constantly checking to see if she had miraculously come back to life. People kept saying “where there is life there is hope”. For seven hours we waited and waited for my mam to take a breath on her own. She never did.

That night mam’s bed was wheeled out of ICU and brought through the corridors of the hospital with a nurse blowing air into her lungs through a mask to keep the organs healthy for the recipients. At the end of a long, dark corridor a door suddenly opened, it was the theatre. It was bright and she was just handed over. The door closed and she was gone . . . forever.

I had left the hospital at that stage to go home to my children. My dad and sisters have said this image will never leave them.

When we brought my mam home we were told to pick out clothes that had a high neck to hide the scars.

Organ donation is so important and is the ultimate gift – the gift of life to someone you’ve never even met. By its very nature it is usually as a result of a sudden and tragic death.

The donor families are trying to make decisions – important decisions – at the worst possible time in their lives. It is such a noble thing to do that to say anything negative or to even discuss the process is frowned upon. But like a lot of things in Ireland, it would benefit from more discussion, debate and better management of the frail and strained emotions involved. The process should be as much about the donor’s family as it is about the recipients.

My mam wanted to donate her organs, of that I have no doubt. But as her next of kin, the decision rested with my dad. What if he said no? Two people could still be on dialysis and another could still be waiting on a liver transplant.

There has been debate on whether Ireland should replace the current opt-in organ donor system with an opt-out system whereby people are assumed to be donors. Whether or not this happens, anything that raises discussion about organ donation can only be a good thing. People need to be aware that it is not an easy decision to make and that it does raise other issues. We should talk about organ donation with our loved ones so we know what they want should something happen. And it can happen quickly . . . without any warning. It happened to us.

Out of the three people who benefited from my mother’s death only one got in touch to say thank you. That card meant so much to us. I would urge any recipient to make contact with the donor’s family because the day the donor gets their life back, some other family is falling apart.

I am so proud of my mother for being an organ donor. She was a woman who always gave more than she ever took and this was true in her life and in her death.

I still carry a donor card every day and will encourage my children to do the same.