‘I remember thinking there’s hope, it’s okay to be okay on days, it’s okay to laugh’

The day after her daughter's death, Lyndsey Pilkington returned to her house in Newbridge, Co Kildare. "Leyla's stuff was everywhere but she wasn't there," she says, remembering how silent the house seemed in spite of all the people coming and going. Leyla, who had turned one just a few days earlier, died suddenly in her mother's arms on a Thursday in April 2012, with what the postmortem later revealed was streptococcus pneumonia.

“It was massive shock; I just wanted to run away. It’s something you just don’t want to deal with.”

The next few months were a blur but, at some point in the two weeks following her daughter’s death, she received a call from the Ger O’Brien, the head of the Irish Sudden Infant Death Association’s bereavement service. “I never would have contacted them as I would always have associated them with cot deaths,” Lyndsey says.

In fact the national organisation, which is in the process of rebranding to First Light, offers support to any family suffering the sudden bereavement of a child up to, and including, the age of 12.

That phone call was “like a saviour coming to us”, Lindsey says. “I was in the depths of despair after losing my child, but Ger was like a friend coming to talk to us. She was so compassionate; she had so much empathy for us.”

The organisation arranged for Lyndsey to see a counsellor who herself had lost a child and she attended group sessions and residential weekends where she met other bereaved parents.

“It helped to see the way other people were who were further along the road from me . . . Sitting in that room I remember thinking there’s hope there, that it’s okay to be okay on days. It’s okay to laugh,” she says.

Looking back now, she says the organisation “brought light back into my life”, adding that “it’s an ongoing thing. It’s over two years now and I am still going to meetings, I’ve made so many friends through the organisation; I can pick up the phone anytime and they’re there for me”.

Kevin O’Meara, chairman of the volunteer council of the Irish Sudden Infant Death Association/First Light, aptly describes the organisation as “an unique club that nobody wants to be a member of”.

Like all the other current council members, Mr O’Meara has suffered bereavement – his son Timmy died in June 2002 at just 2½ months, after which time he and his wife were contacted by the organisation offering support.

“When something like this happens it’s like a bomb going off, you don’t get any warning,” he says. “You’re in a fog. In one sense you were never more alive, because you’re so aware of everything going on, but in another way . . . you’re wondering ‘is this really happening at all’?”

Mr O’Meara says bereavement does not just affect parents, but siblings, grandparents and other family members for whom the organisation also provides professional support. The group provides a 24-hour hotline and a crisis intervention service, contacting families where they are made aware of the sudden death of a child.

As well as providing one-on-one house visits to support bereaved family members, they also hold group sessions and support weekends, where parents can share their experience with other families under professional guardianship.

“It’s by meeting other people who’ve been through this that you see that other people are living with it . . . It is a life sentence, but you now have your coping mechanisms, because you’ve been shown how to cope,” Mr O’Meara adds.

The organisation began as an informal support group in the 1970s when a group of bereaved parents came together around a kitchen table to share their experiences with one another. It was formally established in 1985, originally as a support for parents whose children had died from Sudden Infant Death Syndrome (Sids), more commonly known as cot death.

It was behind the Back to Sleep information campaign which, since its introduction in 1992, has contributed to a dramatic decrease in the number of cot deaths. The dramatic reduction in Sids deaths led the organisation to expand its services to any family who has lost a child up to 12 years of age – regardless of how long ago the bereavement occurred.

First Light/Irish Sudden Infant Death Association: Hotline: 087-242 3777 Office: 01-873 2711 Helpline: 1850 391391 firstlight.ie