CHILDREN / A parent, in sickness and in health: Is understanding your child's illness the best way to protect it? Carmel Fitzsimons on challenging medical opinion

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The Independent Culture
ROSAMINE Hayeem was still drowsy from the anaesthetic after the Caesarean delivery of her daughter when she was told the shattering news that her baby had spina bifida. Although dazed, she heard with terrible clarity the suggestion implicit in the surgeon's question: 'Do you want us to do anything about her or not?'

Medically the baby's life was in the doctor's skilled hands, but from that first moment the decision to save the child belonged to the mother. By telling the doctor to operate, Rosamine Hayeem knew she had elected to fight for Judith, even if it meant flying in the face of medical opinion.

'They told me she would deteriorate. That she could easily be just a vegetable,' remembers Mrs Hayeem. Her daughter Judith, 22, now has a BA in psychology and is completing her MSc in experimental psychology at London University. 'Through Judith I learnt that as a parent you can become forced to challenge the medical establishment. That no doctor, no matter how dedicated, can fight for a sick child's health as a parent can.'

This month saw the release of Lorenzo's Oil, a film about two parents faced with the horror of their son's impending death from a rare condition called adrenoleukodystrophy. Doctors told Augusto and Michaela Odone that there was no cure for their son, Lorenzo.

The Odones had no medical expertise but they felt the battle for their son's life could not be left to the medical establishment alone. Combining work, caring for the boy and studying in medical libraries from dawn to dusk required an almost superhuman effort but the Odone parents finally made a breakthrough and Lorenzo began to recover. In recognition of his work, Lorenzo's father was awarded an honorary medical degree. The oil he discovered as part of the cure has saved hundreds of boys but it took lion-hearted parental love to find it, not qualifications in biochemistry.

The Odone story is an exceptional one, but it illustrates one of the difficult choices facing parents of sick children. Many, hearing their child is sick - be it with a life threatening illness or a more common condition such as eczema - become paralysed with anxiety. They do not ask too many questions - and they gratefully accept any medicine, any hope. Others feel they have to become experts in their child's condition if they are going to be able to best protect their offspring.

Rosamine Hayeem is of the second school. 'I think parents have to be prepared to do their own homework. People I met in hospitals would often ask me why I did not just listen to what the surgeons said, but I suppose it's a matter of personality with me. There are mothers who are afraid and intimidated by doctors but I could not leave my daughter's care to someone else.'

Spina bifida is a condition that occurs in the foetus early in pregnancy, affecting the neural tube which develops into the spine and brain. When the child is born, surgeons have to close up the lower section of the spinal cord which has been left exposed, but there is usually paralysis below the fault. The condition is often accompanied with hydrocephalus, a swelling of the head caused because the excess spinal fluid bathing the brain fails to drain off quickly enough. Hydrocephalus can be effectively treated by inserting a valve, called a shunt, into the cavities of the brain.

The spina bifida affecting Abe and Rosamine Hayeem's daughter Judith was relatively mild, but it was the hydrocephalus that became the battleground. Within months of the first shunt being positioned, the Hayeems realised that it had started to block up.

They contacted the Association for Spina Bifida and Hydrocephalus (Aspda) and read everything they could on the mechanics of shunt surgery. In one year alone Judith had to go to hospital 18 times because the shunt had blocked. 'I knew she was suffering tremendous pain, and that if pressure was allowed to build up on the brain it could end in blindness, spasticity, mental handicap,' said Mrs Hayeem. Judith developed 'slit ventricle syndrome', where the cavities which hold the shunt become too narrow. Mrs Hayeem became determined that there had to be some sort of engineering step that could be taken to control Judith's condition and put an end to the constant surgery. She raised money to go to America to discover the state of the art there. She spent hours ringing hospitals, asking what was the latest technology they could offer for hydrocephalus sufferers, and was finally put in touch with the Hospital for Sick Children in Toronto.

Mrs Hayeem took Judith to Toronto twice, where new shunts were implanted. She learnt about a new technique called sub-temporal decompression where doctors make an opening in the skull which allows the brain to expand and widens the slit ventricles enough for the shunt to drain the fluid. But when, after yet another horrifying shunt blockage incident, she suggested the technique to the eminent neuro-surgeon at a reputable English hospital, she was treated with contempt.

'The surgeon refused to see that Judith's condition was becoming critical. He wrote to my doctor saying I was neurotic and that Judith's headaches were psychological. I could see from the scans that Judith's ventricles were blown wide open and eventually I took the only course open and flew her back to Toronto where they operated immediately, astounded that no one apart from her parents had recognised the danger she was in.'

Finally, in 1985 the Hayeems found a surgeon in Nottingham who had trained in Toronto and who was prepared to try the decompression operation. It was a success and Judith has not had a shunt blockage since.

Mrs Hayeem, a teacher with two adopted children, believes the crucial factor in the successful management of Judith's hydrocephalus was that she and her husband were not intimidated by the complexity of Judith's medical condition. 'We found in Toronto there was much more information available - doctors would give parents papers they had written on the subject. Here surgeons want to preserve their mystique, and if we had not been prepared to challenge them I do not think Judith would have the quality of life she has today.'

Carrie Nesbit-Larkin's five-month-old daughter, Mary, also suffers from hydrocephalus but she is happy with the medical help her child has received. 'I know I am at the mercy of the neuro-surgeons but I feel lucky that I live close enough to Great Ormond Street Hospital to benefit from the expertise of the top doctors in the country. There is no home remedy like oil of evening primrose that could benefit Mary, no simple treatment I could offer her. I have to put my trust in the experts.'

Mary's hydrocephalus was revealed in a routine scan at 39 weeks of pregnancy and within three hours the baby was delivered by emergency Caesarian section. Within 48 hours, Mary had her first operation to insert a shunt.

Over the next few months there were setbacks, including a horrendous episode when the shunt burst. Now Mary's condition has stabilised but Carrie, a nurse, is the first to admit that she has been reluctant to find out too much about the condition. 'I wanted to know if there was a support group for the condition. My sister discovered Aspda but it took me three weeks to feel ready to phone them. It was as if I was not ready to confirm that my daughter was hydrocephalic.'

She has thought hard about why she has not chosen to educate herself about her daughter's condition. 'If this was my niece I would be reading about the physiology till it was coming out of my ears. My sister knows the anatomy of the brain backwards since this has happened. Recently she asked me if Mary had communicating or non-communicating hydrocephalus. I told her to stuff it. Because we are talking about my daughter, I feel that at present I only have a limited amount of questions I want to ask. I feel that I would have to detach myself from Mary in order to go and study the brain. I am happy to accept that the doctors know best.'

According to Tony Britton of Aspda, there is no right way to deal with the news that your child has a serious condition such as spina bifida or hydrocephalus. He is convinced, however, that contacting a support group such as Aspda is the important first step.

'Most parents have to spend a period grieving for the healthy baby they have not had, and that can take months. We feel that by getting in touch with us they are already beginning the process of acquiring the knowledge which will help them gain control over their situation.

'We have trained field workers who can work alongside families ensuring they get the best treatment. We do not impose any judgements about the lengths to which they should go to help their child. But when the need arises, we are there to fight for families.'

Not all families are fighting a life-threateing condition. Discovering a child has something as common as eczema calls for parents to make choices about how involved they will become in treating their child. Freddie Duffield was three months old when his eczema began. His mother, Gillian, had been breastfeeding him but the introduction of formula milk as part of a weaning programme had terrible results.

'It was simply frightful. He had an awful weeping and suppurating rash on every inch of his body. It was terrible to watch him suffer. Literally from head to foot he was covered in very red, very itchy tiny blisters which bled if he was allowed to scratch,' says Gillian.

Freddie is now 21 months old and in the last 18 months his parents have sought help from three specialists in the orthodox medical establishment and undergone treatment with two 'alternative' practitioners. 'We could not comprehend that there was no cure. Now we accept that no one is going to provide a magical answer, and that the best we can do is manage the eczema so he can enjoy his childhood.'

They decided early on, after reading widely, that the prescribed cortisone creams only masked the problem. When they were stopped, the eczema would come back with a vengeance. Freddie's consultant, who diagnosed the condition as severe, supported them in their attempts to discover the triggers exacerbating it.

With the help of a dietician they changed Freddie's feeding regimes. Dairy products were eliminated and soya milk substituted. They found that he could not tolerate chicken, turkey, fish, liver, oranges and tomatoes. They banned biological washing powder, woollen clothing, soft toys which harbour house dust. His room had to be thoroughly cleaned daily.

They were also delighted with the help given by a homeopath and a Chinese herbalist. 'We have not gone as far as studying medical research but we read anything which is available to the public and we are greatly helped by information from the National Eczema Society.'

The Duffields try to have a positive and cheerful approach to Freddie's eczema, though this is not always easy. 'You should see him when he is about to have a bath,' says Gillian. 'He has to be greased up like a long distance swimmer. But we feel we have turned the corner, and the doctors now describe his eczema as 'moderate'. It seems that, after a bit of a struggle, we have got it under control.

'As parents, nothing we could do would be too much. But we also try to step back and keep things as broad as possible. We have to keep our confidence because if we let the ezcema distress us too much, it will rub off on him and family life and his early years will just be a misery.'

Association for Spina Bifida and Hydrocephalus, 42 Park Rd, Peterborough PE1 2UQ (0733 555988); National Eczema Society, 4 Tavistock Place, London WC1 9RA (071-388 4097).

(Photograph omitted)