Building from grief

A woman who saw her daughter and husband dying at the same time has dedicated herself to the provision of hospices. One for children opens this year. By Jack O'Sullivan

It is not difficult to see why Hilary Holden is founding a children's hospice. When her local hospital decided there was nothing more that could be done for her daughter, Joanne, she was sent home to die. No hospice existed and the hospital needed the bed for the curable. Joanne was four years old and suffering from acute myeloid leukaemia, having spent more than a year in and out of hospital receiving treatment. Mrs Holden nursed her at home for the final few months.

But it wasn't easy. Mrs Holden had no relatives to help. And in the middle of her daughter's illness, her husband, Glyn, went into hospital with a prostate problem. "It turned out that he was riddled with cancer," Mrs Holden says, recalling events that occurred almost 20 years ago. Glyn had always said that he would not want to know if he had a fatal illness, so he was never told that he too had cancer. Mrs Holden found herself caring for both her husband and daughter at home or rushing between hospitals 40 miles apart.

Out of that double tragedy, Mrs Holden, now 50, has, however, created an extraordinarily fruitful legacy. Joanne died first, at home. In the following months, her husband, unaware that he too was dying from cancer, suggested they try for another child. "My GP said, `It's up to you Hilary, but rest assured that at some stage you will be a one parent family'. I decided that we should go ahead and fell pregnant right away. I had hoped Glyn would at least see our baby, but he died in the February. It was a terrible blow. At the bedside, we'd even chosen names - Rebecca Elizabeth for a girl. That was Glyn's choice. She was born on 16 June 1979, Father's Day, and she was the image of him."

On Monday, Becky, who has never met her father or sister, will be 18. Meanwhile, Mrs Holden is celebrating the second outcome of her tragedies. Having, after her husband's death, helped to build a hospice for adults - the Hospice of the Good Shepherd in Backford near Chester - she has now succeeded in raising enough money for a children's hospice. Mrs Holden recently sold her wedding and beauty businesses, which supported Rebecca through her childhood, to become full-time appeals director of Clare House, which will be attached to Clatterbridge Hospital in Bebbington on the Wirral.

"I would have preferred Joanne to have spent her last few months in this sort of a hospice, rather than at home," Mrs Holden says. "Had she been there, Glyn and I could have stayed with her and she would have been nursed professionally by experienced people. When you are at home, you are constantly worrying have you done this or that. If something goes wrong, you have to get the doctor out. In a hospice, specialist staff are ready and waiting to help night and day.

"A hospice is also better than a hospital. It's terribly depressing for parents, once they know their child is not going to get better. Their child is on a ward with other children who are getting well and leaving. In a hospice, you are all in the same boat, with sick children who are not going to get well."

Clare House is expected to open in late 1998. The pounds 1.6m building, funded without NHS help, will have six beds and cater for children, aged between three and 18, with life-threatening illness. Local paediatricians anxious to free up hospital beds for the curable, are keen to see the hospice open as soon as possible.

There are currently 200 hospices in the United Kingdom, dealing with 56,000 admissions annually, the vast majority being cancer cases. But only 10 hospices are devoted to children. Throughout this month, the National Association of Hospice Fundraisers will be running a Sunflower Appeal - sunflower brooches will be available nationwide in exchange for a donation. Clare House will cost pounds 750,000 a year to run, relying on public and charitable subscription since it will not seek payment from parents.

"Unlike adult hospices where there may be two or three people together, the children will have individual rooms," Mrs Holden says. "While they are there, they can bring what they like, including their posters - thank God for Blu-Tack - to make the room feel like their own. Each room will have its own patio, so that, even if they can't get up, they can have time out in the fresh air in their beds." Parents and siblings will be able to stay over. There will be a "multi-sensory room" with special lighting and flowing water for relaxation and a chapel. Each family will have a separate table in the dining room.

"When a child dies," Mrs Holden says, "we will have what will be called the snowflake room or quiet room. It will be a bedroom that is refrigerated, where the child can be placed. Off the room will be a place for the parents to stay, leading to a quiet walled garden. This whole area will be off limits for the rest of hospice, unless parents need support. They will be able to stay for a few days, if they wish."

Even years after a child's death, parents will still be welcome at the hospice. "There will be a meeting once a fortnight or month for all those in this situation to share their feelings," she says. "You never forget the death of your child. This weekend, for example, when Becky is celebrating her 18th, I'll think of Joanne who didn't get to her 18th."

Hilary Holden's thoughts will also be with her dead child on 20 July. That is the day when she is scheduled to marry her second husband. "Becky has been helping me to choose my wedding dress. It would have been nice if Joanne could have been here as well. Then both of my daughters could have been bridesmaids"n

Clare House Children's Hospice Appeal is based at 19, Castle St, Liverpool, L2 4SX. Tel 0151 236 6524.