With six cots, Zoe's Place offers free palliative care to terminally ill babies and respite care to help the parents of severely disabled babies under three years old. Some of these children cannot see or hear. They often have no control over their limbs, sometimes needing to be tube-fed through their stomachs.
Zoe's Place, which opened in Liverpool in March, is a registered charity and comes under the umbrella of the Life organisation which actively campaigns against euthanasia and abortion. On 1 August, the Life Foundation headquarters in Leamington Spa issued an emotional press release offering a hospice place to severely brain-damaged 22-month-old Thomas Creedon. It was in an attempt to prevent Fiona and Con Creedon, Thomas's parents, from going ahead with their court battle to establish their right to withdraw tube-feeding from their son and allow him to die.
Nicky Goldberg, hospice manager and leader of the nursing care team in Liverpool, does not condemn the Creedons for seeking euthanasia, but argues that things should never be allowed to get that desperate. "If somebody allows them breathing space to consider, once they've had that support I think they'd realise that it isn't the answer."
Ms Goldberg believes it is appalling that parents with severely damaged babies receive so little help. She has been told by health professionals that under-threes do not need hospice care because parents can cope with babies. "I say, if they need tubing all night, and they're screaming for 18 hours out of 24, do you really think that they don't need respite care?"
She argues that Zoe's Place can give these terribly damaged or sick children a worthwhile quality of life. Even those babies who are dying can be helped. "Conditions we might have are severe spina bifida, severe hydrocephalus, severe heart problems and syndromes that have a very short life expectancy. If the babies are in pain, they are given adequate analgesia, and with the short time they have got left we let them live that life to the fullest. We treat those babies, we talk to them, we love them, we stimulate them."
Parents can play as great or as little a part as they wish in their child's care. "If a child is near death, we would aim for parents to spend as much time as possible with that child in privacy and peace and quiet. We want the family to be able to come to terms with the death and see the baby on its final journey together.'
The staff at Zoe's Place are driven by a quiet conviction. Like many in the adult hospice movement they emphasise the value of life, of individuality. Janet Massey, one of the care team, wakes Kate, who is receiving respite care, with a gentle stroking of her leg. Normally, she would have been left to sleep until she woke up, but today she has an appointment at the hospital. She has a bath, and the dressing on her gastrostomy tube is changed. All the time Ms Massey talks to her, touches her. Later, she may play with some of the soft toys or listen to music.
Zoe means gift of life, and Ms Goldberg insists that people should move away from the idea of the hospice as a place where babies die. In fact, only 10 per cent of the hospice's work is with babies who are terminally ill: "Yes, we will have that happening occasionally, but there is also a lot of joy in the hospice."
Ninety per cent of the children they care for have a more long-term outlook. Many will be brain-damaged, but brain damage is not in itself a terminal condition. In many cases progress is good, and it is only when the damage is extremely severe that life expectancy may be affected. Experts who work with older children say that predicting the future outlook for them is an uncertain business. Children who appear to have similar degrees of damage may cope very differently. While some do not progress, others can confound medical opinion.
Brenda and Peter Page are the parents of Jennifer, who is 22 months old. She was born at full term as a result of an emergency Caesarean section. During labour she had suffered foetal distress, opened her bowels, swallowed the contents and choked. Mr Page remembers the nurse handing Jennifer to him, and saying: "She's a lovely little girl, but she's not very well." At first she was given only 12 hours to live.
Against the odds, Jennifer survived. She was diagnosed as having cerebral palsy and epilepsy. "They said she might not walk, she might not talk, she might not see, she might not hear," Brenda Page recalls. While no longer on the critical list, Jennifer was having fits constantly, she was fed by nasal gastric tube, and the family was under enormous pressure. Mrs Page sank into a deep depression and could not accept the baby.
"All her dreams had been destroyed," says Mr Page. "The baby that she'd carried and loved when it was in the womb was not the baby that was born. Her baby died and she was left with something that she couldn't relate to." He found himself struggling desperately to maintain his business while coping with Jennifer almost single-handedly for more than a year.
Then Zoe's Place gave the Pages a break. "The amount of relief that I felt going into the place was absolutely tremendous, knowing Jennifer was going to be in good hands," Mr Page recalls. About this time Jennifer's medication was changed by her consultant, and her fits vanished. Now she has passed hearing tests, and her sight has improved considerably, Brenda and Peter are starting the long road towards some kind of normality.
Karen and Roy Tyndall's youngest daughter, Fiona, was born with a brain disorder. Mrs Tyndall says: "I thought she was suffering because she used to scream and you could not give her solace. It was horrible. At times we both felt like walking out." It was Zoe's that gave the Tyndalls the support to enable them to continue to care partially for Fiona, now aged two. Karen thinks Fiona's progress is largely due to the care the staff give. "They see Fiona as a person, not a problem. She's rolling over now. Before I had Zoe's, I couldn't look at Fiona without grief and sadness. Now I look at her and I'm proud of her."
Working in an ethos where all life is sacred, Ms Goldberg does not share the dilemma that concerns many parents: whether it would be better to help such damaged children to die. "When parents say their baby doesn't even know they are there, I tell them that they are giving their baby something I cannot give and that is love. No one should leave this world without knowing what it is to be loved."
Some parents, though, still wonder if anyone can really say that their child is not suffering. Mrs Page says: "Jennifer looks perfect on the outside, but it's like sugar coating to me. No one can actually say what's on the inside."
Zoe's Place, c/o Life Health Centre, Yew Tree Lane, Liverpool L12 99H.
'Give Sorrow Words: working with a dying child' by Dorothy Judd (Whurr Publishers, pounds 15).Reuse content