Caring network that aims to help bereaved parents overcome grief

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The death of a baby is not something that parents may want to get over. They need to grieve and focus on it to overcome the ''absolute devastation", charities dealing with bereavement said yesterday following the death of Gordon and Sarah Brown's 10-day-old daughter.

Jennifer Jane, died on Monday afternoon after suffering a brain haemorrhage. Yesterday the couple issued a statement thanking medical staff for their help. "Sarah and Gordon are deeply moved by the many messages of sympathy that they have received and thank all who have sent them," a spokesman said.

Erica Stewart, an assistant at the Stillbirth and Neo Natal Death Society (Sands), which offers help to parents who have lost a child before, during or shortly after birth, said: "Parents find support very helpful because often after the funeral they feel very isolated. A child's death is not something they get over. It's not something parents want to get over, it's something you come to terms with. You need to grieve and focus on it."

The charity provides local groups run by bereaved parents, and an information service with details on specific illness or syndromes. It also runs a telephone helpline and produces a newsletter, which features shared experiences.

Ms Stewart, 43, from south London, lost her son, Shane, in 1983 to a heart problem when he was seven weeks old. She already had two girls. She said: "It's absolutely devastating. At the time you want the whole world to stop," she said. "People think you've already got two children or you can have another one but the fact is that child was a person. That's why we give training to healthcare professionals in the care of bereaved parents so they are encouraged to hold the baby, dress the baby and have choices about how much time they want to spend with the baby. It helps in the grieving process."

Sands supplies "memory cards" to hospitals that midwives can stamp with the baby's hand and foot, and to which a photo can be attached. If the parents do not want to take it, it is left in their file should they change their minds.

Ms Stewart said: "Some parents want to carry on as if nothing's happened. They need permission to grieve sometimes and we help them do that. Others ring up saying they've still got their baby's clothes or their ashes, and everyone thinks they're mad. But there's no protocol for a dead baby. We're here to say whatever you are feeling, however long you've kept the clothes, however many times a week you go down to the cemetery, it's OK."

Alder Hey Hospital in Liverpool and Great Ormond Street Hospital for Children in London run the Child Death Helpline, which operates nationally, and offers befriending and emotional support to anyone affected by the death of a child of any age, from stillbirth to adulthood. The helplines are staffed by trained volunteers, who are themselves bereaved parents. The service is funded by charity.

The Foundation for the Study of Infant Deaths, a medical charity, provides support to people who have experienced the death of a baby suddenly and unexpectedly. It runs a 24-hour helpline staffed by specially trained advisers and has a network of "befrienders" around the country – mainly parents whose child suffered a cot death – who support a recently bereaved family either in person or by phone.

Cruse offers one-to-one and – in some areas – group counselling to the bereaved. Dr Colin Murray Parkes, president of the charity, said that, when dealing with the loss of their child, parents should recognise that they may well grieve in different ways. "Men on the whole don't find it easy to show feelings. It's not that they don't have the feelings, it's just that they feel they have to keep a stiff upper lip and it's not manly to break down. That's often misunderstood by the woman, who is perhaps more in touch with her feelings and perhaps gets angry with her husband and blames him for not caring and doesn't feel supported in her own grief. Great understanding is often needed in marriages at such times."

Sands helpline: 020 7436 5881;

Child Death Helpline: 0800 282986; Foundation for the Study of Infant Deaths: 020 7233 2090; Cruse Bereavement Care helpline: 0870 1671677