Launch of a national register of people with cerebral palsy

Monday 6 August 2007 8:31AM (view full episode)

Professor Fiona Stanley runs the Telethon Institute for Child Health Research in Perth and has launched a national register of people with cerebral palsy.She also talks about the Northern Territory project regarding child abuse in Aboriginal communities.


Norman Swan: Welcome to the program - this morning on the Health Report personal carbon credits as the solution for obesity and a healthier lifestyle. Counter intuitive research findings in overweight people which suggests that the current obsession by government and health professionals with overweight and obesity may actually be making people fatter.

And children.

Last week child health researcher and former Australian of the Year, Fiona Stanley launched an important initiative. Fiona Stanley runs the Telethon Institute for Child Health Research in Perth and is also Executive Director of the Australian Research Alliance for Children and Youth.

The initiative Fiona launched was a national register of people with cerebral palsy, a misunderstood condition involving brain damage where movement, speech and sometimes intellectual capacity can be involved. This is close to Fiona's heart since she was one of the first in the world to create a cerebral palsy register, the one in Western Australia and as a result, made some significant discoveries.

Fiona Stanley: We had the first in Australia by a long way but not the first in the world. The first in the world was Swedish and all it is is a collection of people's information about what kind of cerebral palsy they have.

Norman Swan: So a paediatrician diagnoses a child with cerebral palsy and a form is written out and it goes off to a registry. What's on that form, what information?

Fiona Stanley: Very simple information, the only information you really need on a registry is what kind of condition the person has, whether they have a particular kind of cerebral palsy and whether you have any other disabilities because we know about 30% of children with cerebral palsy have epilepsy, 30% of them have intellectual disability. We need to know the severity, we also need to have information on the date of birth of the person because it's extremely important to look at the trends over time of these disorders, and what's really powerful in a registry, if you have the capacity to link it back into birth data so you can then -

Norman Swan: So what happened to the mother in pregnancy and that sort of thing.

Fiona Stanley: Exactly and the birth weight of the baby and the gestational age of the baby and what the risks were that the mother had in the pregnancy - whether she had pre-eclampsia, whether she had a haemorrhagic phenomenon in the pregnancy and can be linked to later problems. How that data then is utilised is something that happens around the registry.

Norman Swan: So there's extra research beyond it.

Fiona Stanley: Exactly.

Norman Swan: Now just remind us what findings have been made as a result of the West Australian registry.

Fiona Stanley: We set it up because the time of setting up both the cerebral palsy registry and the birth defects registry occurred about the same time in Western Australia and the two things that were scaring paediatricians and the neonatologists and birth defect researchers were thalidomide and the other one was oh we're resuscitating all these very low birth weight babies, very tiny pre-term babies.

Norman Swan: And neonatal intensive care was causing, the theory was it was causing cerebral palsy as indeed it was.

Fiona Stanley: Well the worry was that we're increasing the survival of these babies but what are they like? So we were able to chart along with other registers around the world the increase in proportion of very pre-term infants with an increase in quite severe and significant spastic diplegia and related abnormalities. And that's a terribly important function of a registry is to keep on giving back to the neo natal paediatricians very good information on week by week of gestation, not only the death rates of those children, but the quality of the survivors.

Norman Swan: And that has improved over the years?

Fiona Stanley: It has but of course the lower you go the more likely there is to be an increase of damaged survivors and that's why the national registry I think is going to be so important. We have thankfully a very small number of cerebral palsy children in Western Australia but to have it on the whole 700 children, rather than on the 70 or so that are born in Western Australia means that the precision of gestational week cerebral palsy rates, we can give very precise rates to the neonatal paediatricians.

Norman Swan: What are the causes, because apart from neonatal intensive care, the causes are still a bit of a mystery?

Fiona Stanley: That's right, even with neonatal intensive care the causes aren't actually neonatal intensive care really, what they are are the things that causes the baby to be pre-term or are complications of that baby being pre-term. So they are two different kinds of causes in the very pre-term infant, the causes that switched on the pre-term delivery such as inflammation or infection, or haemorrhage often are the reasons why the baby is brain damaged. But if babies who are very pre-term are born with potentially normal brains then keeping them alive with intensive care can lead them to be at risk for having things like intra ventricular haemorrhage which is bleeding in the brain after they are in the intensive care unit and also they are at a much greater risk of getting infections and other things which cause their brains to be damaged. So that's very important to monitor.

Norman Swan: And you were one of the first people to show that in fact what people used to think was that it happened at birth, you know lousy obstetrician, bad forceps delivery, the baby was deprived of oxygen and that's an exceedingly rare cause of cerebral palsy.

Fiona Stanley: That's been probably the most, well the biggest causes of CP are not in the pre-term, that's only perhaps about 30% or so of CP. Most of cerebral palsy is in term fully grown babies and basically the birth asphyxia story was dominant, everyone just thought that birth asphyxia was the cause of cerebral palsy in these term babies. And I think the register analyses that we did showed very clearly that it was probably about 3% or less. So what does cause all these problems and that's where the questions about things like viral illnesses, about some genetic pre-dispositions to brain anomalies that occur during pregnancy, early pregnancy. So we really need to unpack what about these other infections and is it about when it happens.

The thing that I think interests a lot of us is there seem to be these abnormalities of what we call brain cell migration. They can occur anytime during the first and second trimesters in the pregnancy.

Norman Swan: So this is where you have this lump of nerve cells in the foetus which then have to travel certain distances to form the brain and make connections and it's thought that a whole series of problems from dyslexia through to cerebral palsy might be the result, that they don't go to the right address.

Fiona Stanley: That's right and we don't really know why these are caused.

Norman Swan: And your point is that by having a national register we've got large enough numbers to get more significant results.

Fiona Stanley: Because if these causes are quite rare, and they're likely to be, I liken the cerebral palsys very much to the intellectual disability causes where you've got a large number of rare causes.

Norman Swan: Leading to the same end point.

Fiona Stanley: Absolutely, so it would be very good if we could map cerebral palsy nationally and if people are worried about things like environmental exposures for example we could actually start to map those sorts of exposures and see whether they are linked.

Norman Swan: Now just on another matter, you're Executive Director of this alliance for children's wellbeing and you've just written an opinion piece for the Fairfax Press complaining a little bit about the Northern Territory project.

Fiona Stanley: The opinion piece that I wrote for the Sydney Morning Herald was a commentary on whilst it's very important to put child abuse on the agenda and particularly in Aboriginal communities where we know that it is an increased risk. What I'm worried about is that this is focusing on the symptoms and not on the causes and there have been a lot of reports before the Little Children are Sacred report which came out since.

Norman Swan: Which is the Northern Territory report.

Fiona Stanley: Yeah, that recommended a whole lot of interventions which were focusing more on why these things happen in the first place and every state in Australia actually has a child protection department in crisis because people have too much focused on the punitive end of child abuse and neglect and not on the pathways to it. It's very important that we remove perpetrators and we actually are trying to identify them and it's very important that children will come forward and trust that there will be an appropriate response to that. But I think that unless we start asking what are the pathways into child abuse and neglect, are there ways that we can actually support interventions that will reduce that and there are lots.

We know more now about the kinds of developmental trajectories into these poor outcomes for youths than we've ever known and we seem incapable of putting in place, particularly in some of these Aboriginal communities the kinds of structures and support.

Norman Swan: So what would be the high priority things that you would do?

Fiona Stanley: The high priority things actually start with things like housing and living conditions, they start with Aboriginal controlled services where healing and restorative justice and acknowledgement of pathways such as the stolen generation are acknowledged because we know the mental health problems, and the alcohol, and the domestic violence, we've seen this very clearly in the studies we've done in Western Australia with the WA Aboriginal Childhood Health Survey, the pathways into this kind of behaviour are linked back to things like the stolen generation, to the break down of family, to the break down of cultural integrity. We've got fabulous data from British Columbia and our own data in Western Australia which shows that some tribal tracts, for example in British Columbia have very low rates of things like suicide and child abuse - almost non-existent whereas other tribal tracts have incredibly high rates. And the differences are cultural integrity, language, treaty negotiations, more women on councils, more Aboriginal control of health services and other services.

So it's a very powerful protective effect, so the importance of actually having not only the kinds of interventions that are important such as good housing, very good services for children very early on, youth programs that look at healing is actually involving Aboriginal people in the delivery of those services and there are now a lot of trained Aboriginal people who could be utilised for those services. Support for parents, particularly young parents on how to parent and how to cope with being parents, support for the grannies because they're getting burnt out coping with their kids who are going off the rails. A lot of that kind of support are the things that are going to turn these trajectories around and that has just not been delivered in Aboriginal communities in spite of the recommendations to do so.

Norman Swan: But surely there's a need for - people used to say the same thing about immunisation, don't go and immunise the developing world because you're just papering over the cracks, you shouldn't do it, you've actually got to get into the causes. Isn't things like going in and just creating a safe environment, the immunisation which gets you over the hump and you've got a safe environment for people to get on with it. And the other thing that's there in the international literature going back to the19th century is teaching literacy is teaching and we've got Aboriginal schools that actually don't teach literacy. And you say well go to this school and they will learn a language that is spoken by a couple of hundred people rather than learning English which is going to be a survival mechanism for the 21st century.

Fiona Stanley: Absolutely and the recommendations out of our WA Aboriginal Child Health survey which we fed back to the government several years ago was to teach English, rather than Aboriginal English but a lot of the research around that shows that in fact where language is still viable then teaching English as a second language is often the way to teach literacy in those communities. But the point that I think that you're making actually supports the fact that if you don't have a group of people who are able to participate economically, socially and civilly and Aboriginal people at the moment are unable to do that and don't concentrate on those constructs as well as making environments that are safe for children, then I don't think that in the long term this is actually going to be the solution that everyone hopes it will be.

Norman Swan: Can you point out communities where it's working?

Fiona Stanley: Oh yes, we've got several now in the West Australian communities where in fact you've got Aboriginal-controlled brokering of services and so on which have certainly been effective. We had about five of them present at our recent Rio Tinto Aboriginal Symposium where in fact because they were so successful they were swamped with people coming to utilise them. So yes, there are very good success stories out there and I think when you come up, when you have a group of Aboriginal people who come with a set of strategies that they know is what their community needs, that should be supported.

Norman Swan: Fiona Stanley who's Professor of Paediatrics at the University of Western Australia. And you're with the Health Report here on ABC Radio National.


Professor Fiona Stanley
Telethon Institute for Child Health Research
Executive Director of the Australian Research Alliance for Children and Youth,
Professor of Paediatrics
University of Western Australia,

Further Information

The Australian CP Register
Cerebral Palsy Helpline
Ph: 1300 30 29 20
The Spastic Centre


Dr Norman Swan
Brigitte Seega