About 500 babies are stillborn in Ireland every year and hundreds more die shortly after birth. Up to 25 years ago, the grief of people who had lost a baby was rarely acknowledged.
But eight women from Dublin who had lost babies got together in 1983 to form the Irish Stillbirth and Neonatal Death Society (Isands), to offer help and advice. They also successfully campaigned for the setting up of a stillbirth register, which includes retrospective registration.
Of the 5,500 calls the charity gets every year, many are from parents who lost babies 30 or 40 years ago, says Isands national chairwoman Ron Smith-Murphy. "It was a different era then. When they have the rest of the family reared, they can go back now to remembering a baby they lost."
The first contact people usually have with Isands is through its booklet, A Little Lifetime.
"This booklet was like my best friend when Ruth died," says Smith-Murphy, the mother of Simon (20) and his younger sister who died at six weeks, 15 years ago. It is given to people when they are told at a scan that their baby has died or will die, she explains, or after an unexpected stillbirth.
"It is very helpful," says Mary McGrath of Balbriggan, Co Dublin. "It tells you things you have to think about straight away, like taking photographs."
She and her husband, Richard Long, lost Xavier, who was stillborn last August, three weeks before his due date. His surviving twin, Jethro, is a constant reminder of the son they've lost. They have two older boys, five-year-old Isaac and three-year-old Theodore.
"It is very strange to have a baby who can make you feel sad. He'll do something cute, and you'll think it would be cool if there was two of them doing it," says McGrath.
Still raw and new on the road of bereavement, she has found the Isands parents' meetings "really excellent. You can say anything there, things you couldn't say to people in the real world."
Smith-Murphy still remembers the first meeting she went to. "I sat in that room 15 years ago and for the first time I felt normal again. I felt I belonged." She is now one of Isands core group of 30 trained volunteer facilitators who travel to support meetings for bereaved parents around the country.
"It's tough work," she says. "For any newly bereaved parents, their lives are just devastated. The only thing they want is their baby back, but you can't provide that."
One significant change she has noticed in the last five years is that with many couples now not trying to start a family until much later in life, a lost baby might also have been their last chance to have a child. It adds another heart-breaking dimension to the bereavement.
Contact Isands on 01-8726996 or log onto www.isands.ie