Red nose money to fund research

Ruapehu Bulletin, Volume 6, Issue 300, 18 August 1989, Page 23

Red nose money to fund research

A healthy looking young baby is put to sleep at night. The child never reawakens. It dies in its sleep. Its parents have no idea why.

That scenario will probably tear apart the lives of about 200 parents in New Zealand this year. They will wonder what they could possibly have done wrong. They will wonder why the doctor or Plunket Nurse did not pick up some small clue to the impending tragedy at the last check-up. No one will be able to tell them why it happened. On Friday 8 September, Dr Shirley Tonkin is hoping that at least half a million New Zealanders put on red plastic clown's noses. If they do, then one day someone may be able to explain to grieving parents just why their baby died. Even better, it may be possible to prevent babies from dying unexpectedly in the night. Dr Tonkin is national co-ordinator of the Cot Death Division of the National Child Research Foundation. Through the sale of red noses she aims to raisc $1 million to fund research into cot death. New Zealand has the highest cot death rate in the developed world - four for every thousand live births. Australia's rate of 1.9-3.7 is the next highest, then the United States with 1.73.6, Britain with 2.02.78, France with 2.71 and Italy with 2.6. The high cot death is the single most important factor in New Zealand's infant mortality rate's fall from being the best in the world, to becoming last on the list of OCED nations. In spite of the numbers, Dr Tonkin said the attitude of New Zealand's Government compared well with those of other countries attending the 1989 SIDS Family International conference held in London this April. "Our Government

recognises it as a problem which some of the other countries have not done. The appointment of Dr Michael Soljak as Health Department specialist in infant health is an indication of that." It is still difficult to get the financial recognition that the problem needs, she says. There are plenty of researchers wanting to know more about cot death, but current research is already under pressure from lack of funds. Dr Barry Taylor, paediatrician at Dunedin Medical School co-or-dinating three studies into cot death and undertaking one himself, will lose his research assistant unless funding can be found to pay that person. He will have to abandon his study into monitoring babies who have had serious apnoea episodes, because he has no money to pay the nurse who examines the infants and takes the information from monitoring systems. "And yet so much more research needs to be done," Dr Tonkin says. "Programmes have been planned in New Zealand, but they are held up by the lack of money for researchers." Dr Tonkin believes the lack of funds available reflects on the way New Zealanders view children. "It is very hard to get money for small children. As a community we do not value them in the degree to which they deserve. The attitude is often 'It is only a child. It is the responsibility of its mother.' "Often older people have the money, but want it to go towards things like heart transplants and cancer research. "I think we should realise that children are

our future, and we should want them to have the very best. "But having said that, there are many parents who do give their children the best of everything, and who still have a cot death." Dr Tonkin is not herself a "cot death mother". She came into contact with the syndrome before it was even identified in New Zealand, while working as a GP in Napier and seeing a lot of babies. "I became very depressed with the number of babies that died. It was puzzling, because I knew the parents personally and knew these people looked after their children very well. I began to realise there was some other factor, and the deaths could not be the fault of the parents". She began more research when she moved to Auckland. The Coroner supplied a list of families who had lost children in their sleep, with no medical explanation. She visited each

one to try and find out of the baby had died of an unrecognised illness. "I would call at the address I had been given, see that is was a very nice home, and actually wonder if I had been given the wrong address. At that stage it was still believed that parents of children who died like this could not have been looking after their children properly. "Once I got inside, I found people were actually very keen to talk. The effect of a sudden baby death on the parents became very obvious. The parents needed help almost as . much as medical investigations were needed on the way the baby had died." When Aucklander Mrs Alison McDonald, aunt of a cot death baby, wrote a letter to a newspaper asking why there was no support for parents bereaved in this way, Dr Tonkin got in touch with her. Together they started the Auckland Cot Death

Group. In 1979, with alarm of the baby stops impetus from cot death breathing. father Mr Ken Knight, The groups, branch they set up the Cot organisations of the Death Division of the Cot Death Division, National Child Health grow up where and Research Foundation. when there are cot Today there are 33 deaths. Where there Cot Death Groups in have been no cot deaths New Zealand. Each is or few, there may be no formed mainly of par- group. ents who have been be- From a small homely reaved by cot death. office in a converted They offer each other house in Remuera, Dr support through the Tonkin and staff progrief and try to help duce leaflets on cot prevent the tragedy death, and answer striking others. phone calls from worMany groups buy and ried parents, parents-to-hire out apnoea moni- be and other interested tors which sound an groups.

They, with members of the Auckland Cot Death Group, counsel grieving parents as they endure the harrowing doubts and what-ifs that follow a cot death. "No matter what you say to them afterwards, it can take them years to realise it was not their fault, or the nurse's, or the doctor's. "I can never be successful. I can never bring their baby back. "If we can get enough money, we hope to lower the number of people who feel like that."