10 years of putting living into children’s dying

No matter how familiar you are with the story behind the foundation of LauraLynn children's hospice, the cruel, coincidental twists of fate that one Dublin family suffered on August 30th, 1999, never fails to chill.

On that day, the younger daughter of Jane and Brendan McKenna, Laura (four) had heart surgery from which she never came round. Just hours later their only other child Lynn, then aged 13, was diagnosed in the same hospital with a totally, unrelated life-threatening illness, leukaemia.

“I am glad August is behind us. It just brings you right back,” says Jane (67) on a September afternoon, 22 years later. “It was such a shock – even to people in the hospital.”

She got to do so much, it was amazing, considering she was dying and knew she was dying. Her strength and her courage I don't know how she did it

She feels Laura really died on that Monday, August 30th, in Crumlin children’s hospital, although she was kept alive on machines until the next day. Meanwhile Lynn, who was with her parents in the hospital on the evening of her sister’s operation, seemed rather pale and was sent to A&E for a check-up, which had the devastating conclusion.

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So that one day was “the end for Laura and the beginning of the end for Lynn, although, of course, you had the hopes . . . ”, Jane trails off. As it turned out, their elder daughter had less than two more years to live. Lynn’s two last wishes were to die at home and to have Laura’s remains reburied with her, both of which her parents were able to organise.

After leaving hospital three weeks before her death, Lynn (15) “had a wonderful two weeks for sure”, says her mother. “She got to do so much, it was amazing, considering she was dying and knew she was dying. Her strength and her courage I don’t know how she did it.”

Thanks to the Make a Wish Foundation and other kind benefactors, that first fortnight included a family stay in Dromoland Castle and a trip over to Manchester for a Westlife concert, at which they were taken backstage. Then, just days before her death, Ronan Keating rang Lynn from London where he was making the record "Lovin' Each Day as if it's your Last".

“She was so thrilled,” says Jane, who explains how that last week they had been warned that she might bleed or fit. While Lynn did have a slight fit they managed it with medication. “It could have been worse, which probably would have meant she would have had to go back into Crumlin.”

This September 27th marks 10 years since the LauraLynn hospice, built in the grounds of the Children's Sunshine Home in Leopardstown, south Dublin, opened its doors

Within weeks of Lynn’s peaceful death at home, Jane began to reflect on how guilty they would have felt if medical issues had prevented them being able to meet their daughter’s wish to die at home. She started to think how a third option, a hospice, was needed as an alternative to hospital or home. “That is what set me on the road and I decided to start the research. Lynn brought me to it.”

When she saw children’s hospices in operation abroad, her eyes were opened to how palliative care for children living with life-limiting conditions and their families was really the core of hospice work; being an option for end-of-life was a more minor part. Jane was more convinced than ever that we needed one in Ireland, setting up the hospice foundation in 2001.

It required huge personal determination and the generosity of friends and strangers to make that notion a reality, and there were hard times, says Jane, when she would recall her husband’s comment at the outset, “are you crazy?”

“But in general I am so glad I did stick to it. I know even friends don’t believe me but it’s still true, I would prefer to be the person at the back of the room so I don’t know how sometimes I did the media stuff. I did get a little less stressed with it but it was never my thing.”

This September 27th marks 10 years since the LauraLynn hospice, built in the grounds of the Children's Sunshine Home in Leopardstown, south Dublin, opened its doors. Over that time they have worked with more than 520 terminally ill children and the decade is being celebrated with a memorial tree in the grounds and a birthday fundraising appeal.

With up to 4,000 children living in Ireland with life-limiting conditions, of whom approximately 370 die each year, the number LauraLynn can work with might sound small, she says almost apologetically, but she knows the hospice plays a huge part in the lives of those particular children and their families.

Aoife Shiels (43) can testify to just how important LauraLynn is to families like hers. She and her husband, Kieran (44), went into the 20-week scan on their third baby, excited to find out the sex. It was a boy but they were also told that he had severe hydrocephalus – fluid on the brain.

Unlikely to survive the pregnancy was the prognosis and, if he did, the extent of his mental and physical disabilities meant he wouldn’t live long after birth. When he was born, they hadn’t got a car seat for him because they didn’t expect to be bringing him home and they were making preparations to donate his organs, but “basically he just fought on”.

Here they are, seven years later, with Conall who Aoife describes as “a gorgeous little character, very smiley, claps hands and is a very happy boy”. But he needs 24/7 care.

He is fed through a peg on his stomach – although he has managed some oral foods over the last year – and he takes 22 medications a day at different times on a fixed schedule. Inevitably, for the couple and their older children, Cara (13) and Senan (11), home life in Letterkenny, Co Donegal revolves around Conall.

“We were told should this child survive or pass, it is going to affect your lives; it is going to affect the siblings, it is going to be a big deal,” recalls Aoife. “And it is. It is a 24/7 job but you’d rather be doing it than not doing it because he is just a wee joy. We have friends who have lost children and it’s so hard, so we’ll take every night’s feeding and every medication that we have to do. It is what we do to keep him.”

She and Kieran, both primary school teachers, try to make life as normal as possible for Cara and Senan but sometimes plans have to be changed because their brother isn’t feeling well or has a hospital appointment.

It is just fabulous because you know Conall is safe downstairs with staff who know him. It's peace of mind

“Their wee lives have to be worked around [him] at times but we do our best.” Aoife has taken a career break but is doing subbing work when she can “because one wage coming into the house is not enough”. Conall now attends the Little Angels School for children with special needs in Letterkenny until 3pm during the week.

Their public health nurse introduced them to LauraLynn when Conall was about two years old. Since then, the 15 nights a year they can all spend there while he receives respite care is a highlight of the family’s year. They were last there during the first week of August for five nights, after a 20-month absence due to the impact of Covid-19.

“By God we were hanging out for it – we couldn’t wait to go,” laughs Aoife, who explains how LauraLynn staff are like family friends at this stage. During the entire first lockdown, the couple were too afraid of the risk of infection to let anybody into the house, so had to manage Conall’s care on their own.

They are entitled currently to have a nurse in five nights a week but, due to a shortage of nurses, they’re not getting their full allocation, which makes life very difficult, especially when they’re both working.

Conall needs around-the-clock care “because his head is so large, he doesn’t have the strength in his neck to move. He can’t move his body so he needs regular repositioning during the night, plus changing of feeds and adding the meds.” It’s hard to stand in front of 30 children in school the next morning after a night of that.

Their trips to LauraLynn, where the family rooms upstairs are “like a hotel”, is the only time they really get the chance to switch off.

“It is just fabulous because you know Conall is safe downstairs with staff who know him. It’s peace of mind. Cara and Senan really get the benefit of it. The last time, we went to Tayto Park and spent eight hours there. We could never take Conall for that amount of time. They had the best day.

“LauraLynn really is a lifeline to families like us, to get the complete break and the quality time with the siblings,” she adds. “Plus, when you’re there you meet other families and they’re in the same boat and you share information. There’s friendships that develop too. It’s an amazing place and we would be lost without it; we just love it.”

The joy and support that the hospice has been able to bring to other families, in the name of Laura and Lynn, over the last 10 years is undoubtedly a comfort to the McKennas. While helping families was always their motivation, Jane is glad their daughters’ names will live on long after their parents die.

She wants to send "heartfelt thanks to all our amazing supporters for their kindness and generosity" over the years. The hospice is still constantly fundraising for its €5 million-plus annual budget but at least it, finally, is receiving statutory funding for €1.5 million of that.

Jane finds it hard to believe it’s 22 years since that August day Laura died and Lynn got her diagnosis. Although there hasn’t been a day since that she hasn’t thought of her two daughters.

“The awful raw pain definitely eases. I don’t know if it ever completely goes.”

Laura would be 26 now, Lynn would be 35 and of course she wonders how things would have turned out for them had they lived.

“I see friends with grandchildren and I am delighted for them. You don’t know what might have happened, we might have had chances... but they were taken.”

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