LauraLynn Hospice

The saddest story that I've ever heard


INSPIRED BY HER GIRLS: Above, Jane with Laura and Lynn on February 17, 1995; top, with the girls a couple of years later; centre, Jane today. Main photo: Tony Gavin

By Ciara Dwyer

Sunday January 16 2005
ON a Thursday night in the Dublin suburb of Blanchardstown there are squeals of laughter coming from the crowd in Brady's pub. In a quiet corner of the bar, a neat blonde woman in a jumper sits opposite me. Her name is Jane McKenna. She sips her cappuccino, then reaches into her handbag.

"I brought these," she says,placing two laminated photos onthe table.

In the first photo, there is Jane, sitting on a chair, smiling, as she holds her new-born baby. The baby's tiny fingers are curled against her mother's chest. Beside them stands a little girl wearing the proudest smile I have ever seen. The digital red numbers stamped in the corner of the photo say that it was taken on February 17, 1995.

The second photo was taken a few years later. It shows the same three people - Jane sitting on a chair, the smiling sister (now older and trendier in earrings, rings and a bracelet) sitting on the floor. In her still childish arms is her little sister, a doll of a child with ringlets, big blue eyes and a smile full of tiny milk teeth.

These are Brendan and Jane McKenna's girls; Lynn was their first-born, Laura their second. Jane takes another sip of her cappuccino and tells me their tale.

"I was just an ordinary person from Finglas East," she begins.

Jane's father worked in the civil service and she, with two of her three brothers, followed him into it. Her mother died when Jane was 20. A few years later, Jane married local boy Brendan McKenna. They were six years married when they had their first child, Lynn. Nine years later, Jane was pregnant again. She was 40.

"We'd never really planned either pregnancy. But this time I did worry, because I had the gap. It was almost as if I knew there was something wrong."

One of the doctors in the Rotunda told the McKennas that there was a slight murmur on Laura's heart. "I thought nothing of it at the time. I don't know whether that's because you don't want to think of anything, or that you're not really with it. There were loads of visitors on the first day, I thought I'd collapse."

Later on, the nurses brought Laura to the special unit. The doctor told Brendan and Jane that Laura had a heart condition. In the early hours of the morning, Brendan and Laura went off with a nurse to Our Lady's Hospital for Sick Children, Crumlin. Jane was left in a ward filled with women cradling babies, and no baby of her own. "I was devastated. I think a priest sat with me for a while."

Hours later Brendan was back. They had kept Laura in Crumlin. She had a hole in the heart and a narrowing of the arteries but it was repairable. Later that day, the consultant in Crumlin explained the heart condition to the McKennas.

"Basically his words were: 'She won't be a world-class athlete, but she'll survive. She'll be fine.' We said that we didn't want a world-class athlete. He added something along the lines of: 'Don't put her in a glass bubble.'"

In time, she would have to have a shunt put in her heart to keep the blood flowing, and after a few years there would be major surgery to repair the hole in her heart. But that was all in the future.

"We got her home the next day. She was a normal kind of child. She would go a little bit blue, but generally she was fairly well. I remember when Laura first smiled at me. Sometimes people say that it's not really a smile, that it's wind - but whatever it is, it's great. She had a mass of curly hair and Lynn thought she was a little doll."

When Laura was seven months, she went in to Our Lady's for her first operation.

"She was attached to machines in the ICU [Intensive Care Unit]. You see these babies hooked up to these machines and it's quite frightening. It's strange, but when you're in our situation and there for so long, you get used to all of that. You know the machines and in a way that's nearly worse. You know if things are dropping."

After the operation, Laura became unwell. The doctors knew that there was something drastically wrong and so they sent for Maurice Neligan. (He hadput in the shunt the day before.) When he opened her, everything seemed fine, but each time he would close her up again, the figures would drop.

"Apparently, he opened her six or seven times. He didn't know what was wrong with her. They told us to get Lynn in as they didn't think that Laura was going to make it.

"I remember thinking, she's only seven months old and I don't really know her and she doesn't really know me. I remember begging God that night to give me a bit of time - little did I know that it'dbe just time. I'd hoped that it wouldbe forever."

Eventually Maurice Neliganfigured out the problem - a clot. He removed it and then closed her up. He told the McKennas that she would be fine.

Laura finally got off the ventilators, but every time the McKennas tried to bring her home her breathing would act up - and they would have to turn back to the hospital. She never lasted very long at home.

Shortly afterwards, the doctors decided that they would take the top lobe off Laura's right lung, to improve her condition.

"She was in ICU again and it was Christmas. I remember Santa coming to see her and she was on a ventilator. On New Year's Eve, she took a turn for the worse. She stopped breathing very briefly but somehow she came back around. Shortly after that she started to pick up."

Laura had her first Christmas and her first birthday in hospital. "She was on the ventilator for her birthday," Jane remembers. Because of all the tubes, she developed a fear of stuff going into her mouth - but one determined nurse overcame this by liquidising food and putting it into a big syringe. Soon she was getting her strength back.

By early February, Laura was able to go home, and the McKennas could enjoy a normal life.

It is a relief to watch Jane smile as she talks about their happy times. "She was a funny little thing, bubbly and gorgeous . . . a little Shirley Temple. The things she'd say and the way she ran. She was always talking to Lynn - 'Lynnie is my sister,' she used say. She loved Barney. I've lost track of what children watch these days . . . "

Jane trails off for a moment, her last sentence hanging in the air, but she quickly reverts to talking about how life was.

Sometimes Laura would get tired and have to sit down. Her big sister loved her to pieces but they had a normal relationship, Lynn often banishing Laura from her room. Jane laughs as she remembers the time that Lynn pushed Laura in a buggy to the local shops.

"A lady had stopped Lynn and was admiring Laura. Then she noticed her breathing. She asked if Laura had asthma and Lynn said: 'Ah no, it's just a hole in the heart. She'll be grand.' Apparently the woman just ran away. We were so used to it, that we were all quite matter of fact about it."

For the next few years, the McKennas carried on living. Brendan and Jane went back to work, Laura was in a creche and Lynn went to school. At weekends, they would go out to Dun Laoghaire for a walk on the pier or maybe go to the pictures. Life was good.

On August 30, 1999, Laura went in to Our Lady's Hospital. It was time to have her heart repaired. (The operation had been on and off so many times.) She was four. Brendan had gone home to be there for Lynn after school.

"Before we went into theatre, I asked if we could give a ring home. Lynn and Brendan had just walked in the door. Laura said: 'Goodbye Lynnie, I'm going to be fixed.'

"Laura had seen a young Down Syndrome girl going off in a trolley and she was looking forward to having her own jaunt on it. She didn't know what she was facing."

When Laura was in theatre, Lynn and Brendan arrived at the hospital. A nurse thought Lynn looked pale and suggested she get her checked out. Jane had noticed her daughter's pallor but put it down to late nights in the Gaeltacht during the summer holidays. Still, as Laura's operation would take some time, they decided to bring her down to Casualty.

When the doctors examined Lynn, they spotted some bruising and a rash. They took blood and did some tests.

"It's funny how you don't cop on to things," Jane says, as she remembers the medics trailing in to talk to them. Finally, the consultant told them the awful news.

Lynn had leukaemia.

"I'll never ever forget that moment," says Jane. "Lynn asked the consultant what kind of leukaemia it was, if she would need a bone transplant, if she would lose her hair. And for some reason she asked if she'd have her own room."

Lynn was only 13 but herfriend Lorraine had leukaemia, hence her knowledge.

As Jane continues the story, one phrase keeps cropping up - "It was a nightmare." If life had been tough for Jane and Brendan with Laura's defective heart, things were now worse. While Laura was being operated on, Lynn was admitted to hospital.

"We were shocked, the whole hospital was shocked. We almost forgot about Laura's operation. We knew we had to face that, but we probably had a bad feeling about that as well. I remember thinking there can't be anything good and I almost gave up."

LAURA'S surgery was a success but afterwards, while still in ICU, the McKennas were told that she had become brain dead. The machine was the only thing keeping her alive. They had to decide if they were going to switch it off.

"It's very hard to make that decision, because you still hope," Jane says. They had a confirmation ceremony for their baby girl. Lynn came to say goodbye. She and her father watched as Laura died in Jane's arms.

"She didn't look dead. I'd seen my own mother and father dead, but with older people it's . . . different. Laura just looked like she was sleeping."

Jane talks of Laura's funeral, of carrying the white coffin into the church in her arms, and of how she couldn't remember much more about it.

The minute the ceremony was over, she and Brendan went straight back to Lynn in Crumlin hospital. Later, Lynn had to undergo what Jane refers to as "horrific treatment" - one of the side-effects being fits.

Ten weeks after Laura's funeral, Lynn's friend Lorraine died of leukaemia.

"Lynn cried at that funeral and I remember wondering what's going around her head - her sister is dead, Lorraine is dead . . . did she know that this was going to happen to her? But she never seemed to be scared."

After the treatment, Lynn went into remission. She decided that she wanted to live life to the full. She got her nose pierced. Jane went with her and was going to get her nose done too - but in the end she chickened out.

"I remember saying to the man: 'I hope your needles are clean because she has leukaemia,' and Lynn said: 'I don't have leukaemia.' That was her attitude."

Life, for however long it was going to be, was for living. With the help of the Make a Wish Foundation, she went to see Westlife in Manchester. She met them for an hour before the show and they dedicated their third song to her.

"It was lovely, but I thought if only if it was for a different reason," Jane says. Lynn also went to Dromoland Castle and lived like a princess - again, thanks to the Make a Wish Foundation.

"It was a lovely time. It sounds strange to people when I say this but it was. Lynn's body was winding down and we were all so open about everything.

"She talked about Laura, she decided what she wanted to wear in the coffin and in her last week she wrote letters thanking all those who had helped her. She wanted to die at home and she did.

"They say that they pick their time to die and if anyone could have, Lynn would have. You have hope right until the end. She took this deep breath and I thought: 'She's coming back to life, it's a miracle.' The rational part of you tells you that this can't happen, but you still hope that it can."

Lynn died on April 18, 2001. Brendan and Jane were the only ones with her.

As Jane speaks in hushed tones, the crowd in the pub sounds cheerier. Life and death, going on all around us.

********

I am almost afraid to ask how Jane and Brendan have kept going. "I remember the loneliness, the pain and the sorrow of just not having them there, of not being able to talk to them. I miss Laura's little laugh. We never really dealt with Laura's death, because we never had time to think about it - Lynn was buried in a different graveyard and one of her last wishes was that Laura be brought over to her.

"Six months later, Brendan and I went to Glasnevin Cemetery where Laura was buried. They didn't want us to go. It was like the funeral we never had. I remember when the little white coffin came up, thinking if only I could openit and take her out, just to lookat her."

They moved the coffin to Castleknock Cemetery to be with Lynn.

"People ask: 'How do you survive?' and I really have no idea.But what's the alternative? You just get up and do what you have to do. And people are very good." After September 11, 2001, Jane found herself writing to Pat Kenny. She had never done this before. She felt so sorry for all the people whose loved ones were snatched from them so suddenly. "At least I got to say goodbye to my children."

It was then that the idea of setting up a children's hospice came to her. "I really believe that the girls put this idea into my head," she says. "The hospice is about living, it's about the quality of the child's life, however short it is. Some people say that if children die, they should die at home, and they should if possible. But they should have the choice. Sometimes the child needs medical care."

So Jane set up a charity - the Laura Lynn Children's Hospice Foundation - and has started raising funds. This is more than a pipedream. She has done research, visited Little Bridge House in Devon (a children's hospice) and a piece of land has already been secured. But they need funds for the staff and for the long-term running of it.

These days, running the charity and making people aware of its existence takes up a lot of Jane's time. This is why she has met me to tell me her harrowing tale. Her husband, while understanding and supportive of the charity, hates the exposure. "Brendan is a very private person," Jane explains.

But life goes on. Birthdays and anniversaries are hard. Jane and Brendan will be 25 years married this year. "Normally your children buy you something or send you on a weekend away for it," Jane says. "They might never have done any of that, but they're not here to doit now."

Jane doesn't go into Blanchardstown Shopping Centre too often these days. It upsets her. "Lynn used to love the shops there. I see new shops like BT2 and think how she would love them.

"One minute I'm fine and the next I'm sad - we still do normal things. We go out for a drink and we laugh and we smile and we have fun. There's no point in saying that we don't, because we do. But sometimes there's a bit of guilt about it."

I look at Jane's red-rimmed eyes and the crumpled tissue in her hand and think this is the saddest story I have ever heard.

To make a donation to the Laura Lynn Children's Hospice Foundation contact National Irish Bank, Main Street, Blanchardstown, Dublin 15. (a/c: 01087029, sort code: 95-15-02), www.lauralynnhospice.com

BrianBoru00 wrote: »

Asking a question on the AH forum about the costs - about it is not criticising those people.

BrianBoru00 wrote: »

Can any one explain to me how the hell this place cost 5 million????
Theres only 8 beds in it.

Does that money cover staff costs as well? because even though I m not an expert in contruction or medicine- Im pretty sure I could have built an 8 bedroom unit for an awful lot less than that..