A legacy from Daniel

As Kathryn Harbison told her story she was aware that the older woman's eyes never left her face. She said nothing, sitting by the interviewer, gazing intently until Kathryn had finished her interview for a local radio station. As Kathryn was leaving the other woman touched her arm and said softly: "Thank you. I lost a baby 40 years ago, and I have never been able to think about it. But you have made me feel better."

Few people have not been touched in some way by one of the most poignant of human tragedies, the death of a young child. Kathryn's story, of the short life of her baby son, is sad - unbearably so for many people. Yet it is also life-enhancing because of the inspiring and positive attitude which grew from this ordeal.

From the short life of Daniel - and how her family coped with his terminal illness - has grown an Irish movement to minimise the pain of having a child die by making sure his or her last weeks are spent in the love and comfort of home. The movement, called a Nurse for Daniel, is run by Kathryn and Florence Horsman Hogan, one of Daniel's nurses when he was in hospital. Nurse for Daniel raises money to pay for nursing care so parents in the throes of this experience can sleep, rest and recharge their batteries, without having to make continual trips into a hospital. It also campaigns for a government allowance to be paid to people with children under two in this condition.

Kathryn, in her 30s, from Delgany in Co Wicklow, and her husband Tony had their first child, Daniel, in the summer of 1995. When he was eight weeks old they learned he had suffered extensive brain damage due to lack of oxygen at birth, and had only a short time to live.

Daniel was a patient in Temple Street Children's Hospital in Dublin, requiring intensive care. Kathryn and Tony were making trips in and out all the time. Eventually Kathryn decided she wanted her baby to be going through this in his home, no matter how difficult.

Hospitals do not take such a request lightly. When Kathryn told the authorities at Temple Street she wanted to take Daniel home, there were endless conferences and meetings, and some well-meaning people tried to talk her out of it. "But it got my stubborn streak going, and I said I am taking the child home whatever, if I have to sell the house to do it." The move to Delgany seemed to prolong Daniel's life. "We never expected him to be home for more than a night or two," says Kathryn, who is remarkably calm and positive about her experience.

"Daniel would have been starting school in September. I will never see that. But at least his time at home means I have some type of precious memories to hold. I have photos. Hospital photos just don't work in that way."

To raise money for a nurse to help care for Daniel in his home, a function was held at Goggins pub in Monkstown in February 1996, with a raffle that was very successful. After baby Daniel died at home that April, Kathryn and Tony were left with a considerable sum. For Kathryn there was no question: the money had to be used to help other people get the support which had made it possible for her to bring Daniel home.

So the money was set aside to pay for nurses who would come daily, or as often as needed, to give parents a break, knowing a trained person would be watching over their child.

Since the group started after baby Daniel's death in 1996, it has helped 32 families across Ireland in this agonising situation. The members' good spirits and no-nonsense approach to this delicate subject, as seen in a recent edition of RTE's Would You Believe, are both an education and an inspiration.

"I knew Daniel well before I ever met Kathryn and Tony," says Florence. She was one of the nurses attending Daniel at night in Temple Street and so has good contacts in the medical world. "We ourselves can't find the nurses, because then we would be the employer, with all the obligations and liability," she explains. "But we can put [parents] in touch with the social worker at the hospital, who will then get them into contact with the nurses. And we help the parents out with the cost."

There is little problem finding willing nurses, except in the Dublin area. The average cost is around £500 a month per family. All money given goes to the nurses' wages, apart from a small amount to pay Florence and Kathryn's mobile phone bills. There is no office, no overheads, and the work is all voluntary. Initially, there were 10 volunteers, but this has halved, owing to the demands on time and energy. Florence and Kathryn are both busy people with full lives - Florence has four children and works as a nurse, and Kathryn now has a three-year-old girl and an eight-month-old boy. "The death of a child is about the worst thing you can go through, but this makes it part of life, more of a normal experience," Florence says. They accept that a move to home might not always be suitable, but say most difficulties can be overcome. Without criticising medical staff or procedures, they speak of the benefits to parents of spending those last weeks at home.

Some children will live much longer if they are in a loving environment," Kathryn says. Florence adds: "From our point of view in the hospital, we are calling them in two or three times a week when a child is that ill, expecting the worst. They will have that awful feeling, is it now . . . and then the situation might pass, they go home again and a few days later it will happen again.

"One set of parents, very young and not married, were devoted to their baby, born with serious heart trouble. They didn't have a bean, but gave the baby all their love and time. However, when the child died, they were on the DART, racing in yet again on one of these alarms."

Nurse for Daniel has more concrete aims than to continue facilitating nursing help for the parents of terminally-ill babies. "There is no State funding for children under two who have severe disabilities," says Florence. "In Britain, there is a palliative care allowance for babies, but not here yet. We are in fact saving the Government a lot of money." There are standard grants from the Departments of Social, Community and Family Affairs, and Justice, Equality and Law Reform (where the junior minister has some responsibility for disability services). None of these would pay for more than one nursing shift a month.

In some cases, Florence says, Nurse for Daniel supplies the only financial help distressed parents receive. "A common thing in this situation is that one parent will have to give up work to look after the child, so the family income is greatly reduced." Even if the Government matched their fund-raising efforts pound for pound, they say, it would be a great help financially and a tremendous boost psychologically. In the meantime they hold mini-marathons and coffee mornings, sell T-shirts and caps, and battle every inch of the way to help people having to face the unthinkable.

Nurse for Daniel can be contacted via Florence Horsman Hogan (01-2821414) or Kathryn Harbison (086-8513628). Donations can be made to Ulster Bank, Dun Laoghaire (Sort code: 98-59-40. A/C no: 577 42 095)