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'Helen didn’t have a peaceful death, she wanted to live so much'

Helen Taylor died while waiting for a double lung transplant in 2014.

helen and luke Helen and her son Luke (left)

HUNDREDS OF PEOPLE in Ireland are waiting on an organ transplant.

In 2016, 280 organ transplants were carried out in Ireland – 230 from 77 deceased donors and the remaining 50 from living kidney donors.

About 600 people in Ireland are currently waiting for life-saving heart, lung, liver, kidney and pancreas transplants.

In November 2014, Helen Taylor died while waiting for a double lung transplant. She had cystic fibrosis and had been waiting for the transplant for a year. She was 38 years old.

Helen was survived by her mother Frances, father Liam, sister Louise, brother John, partner Mick and son Luke, now eight years old.

At the time of her death, Helen’s family appealed for more people to become organ donors.

Frances recently spoke to TheJournal.ie about how her family is coping with their loss two years on.

“As time goes on, it never goes away. It’s like a scar that starts to heal but the scar is still there. You get better at doing the day-to-day business but it’s still very difficult.

“Last weekend, it being Mother’s Day, was very tough. It’s very painful, and for Luke you wonder how he’s doing.

WP_20150531_13_50_12_Pro Luke

“At school they do things for Mother’s Day like making cards, but his class hasn’t done anything for Mother’s Day out of respect since Helen died.

“His life is different to other children’s. He’ll make his first communion this year, that’s very exciting but hard too.”

Frances says all of the family are still “absolutely gutted” by Helen’s untimely death.

Her death itself was so difficult, that she struggled so hard. She didn’t have a peaceful death as she wanted so much to live – to be there for Luke. I often say that she wouldn’t have lasted so long and fought so hard if it wasn’t for Luke. She kept on fighting for him. That made it even harder on us, watching her suffer.

Her brother John lives in Australia and didn’t get home in time to see her before she died.

Frances recalls: “We were told on the Tuesday she wouldn’t make it and she died on the Thursday … [John] was very upset about not making it home in time. He had been home in September and saw her then. He was well aware that she was critical at that stage, he had said his goodbyes.”

Frances says Helen and her sister Louise did everything together and were “best friends as well as sisters”.

“Here’s an absolutely stupid thing – I’m a terrible hoarder but, especially when it comes to anything to do with Helen, I can’t throw it away.

There’s a Christmas pudding that I made the November she died. She loved them. I was getting the ingredients for her when she was very sick … I told her I had made it and I hoped she would be able to eat some of it. It’s still there, wrapped up. I was going to throw it into the bin but I just couldn’t. I couldn’t let go. It just reminds me of that time, when she was still with us. Anything to do with her, I find very hard to let it go.

Organ donation 

Frances says she is very disheartened by the long waits faced by many people on the organ donation list. She recalls how the family “pinned all our hopes” on Helen getting a transplant and were devastated when she didn’t.

“Was it wrong to give her so much hope? Or would it have been more cruel for her to know [it would not happen], for her to think it wasn’t coming?

I’m delighted to hear when any young person gets a transplant, but it’s bittersweet. I still tear up whenever I hear of anyone getting a transplant. I’m glad for them, but it makes me ask ‘Why didn’t she get it?’ It’s not bitterness, don’t get me wrong, it’s hurt.

The Irish Kidney Association’s Organ Donor Awareness Week is running until 8 April.

Frances says she wanted to speak out to raise awareness as, unless a person is directly affected by the issue, organ donation is often not on their radar.

“If it’s not close to your heart, how aware would you be of it?,” she asks.

DSC_0028 Frances and Luke

Frances says she “would be thrilled” if an opt-out organ donation system was introduced here in a bid to increase the donor pool.

Health Minister Simon Harris is considering this option. In 2013, an Oireachtas Committee found that changing to a ‘soft opt-out’ system – where it’s presumed a person wants to be an organ donor unless they state otherwise – could “vastly increase“ Ireland’s rate of organ donation.

The Irish Kidney Association (IKA) has instead called for an organ donor registry to be set up to “increase the number of deceased organ donors”, in line with the HSE’s National Consent Policy.

Speaking at the launch of Organ Donor Awareness Week, IKA CEO Mark Murphy said: “While constantly encouraging the public to consider organ donation is essential, there is evidence that improvements in skills and techniques can also help achieve more transplants.”

Have the conversation 

Frances thinks grieving people would be more likely to be on board with their deceased loved one’s organs being donated if they had previously had a conversation about it, or if they were more aware of how it could save people’s lives.

helen Helen in hospital

Frances says that when her mother died suddenly of a brain hemorrhage when she was only 51 she was “absolutely gobsmacked and shocked”.

“Had anyone said ‘Would you donate her organs?’ at the time, I would have been horrified at the thought of her being cut up.”

This was 30 years ago and, knowing what she knows now, her opinion is very different. She encourages everyone to talk to their families about their organ donation wishes before it’s too late.

The Irish Kidney Association’s Organ Donor Awareness Week is running from 1-8 April.

Organ donor cards can be obtained by phoning the IKA on 1890 543 639 (lo-call) or by texting the word DONOR to 50050 (free). People can also download the IKA’s digital donor card here.

More information about CF is available here.

Read: ‘Helen didn’t get lungs … but we’ll make sure other people get them because of her’

Read: ‘Luke’s Christmas wish is that his mammy gets new lungs’

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About the author:

Órla Ryan

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