The Journal of Paediatrics and Child Health is pleased to present its first issue dedicated to the theme of Indigenous child health. Of course, the journal has already published many articles on Indigenous children, but this is the first time it has published a dedicated supplement on the issue. It was the brainchild of the Editor, Professor David Isaacs. In this introduction, I have chosen to take a rather anecdotal and reflective account of my experience in Indigenous child health in northern Australia, looking back on the last 15 years, mostly in Darwin and Cairns.
My first real experience with issues of Indigenous child health in Australia commenced in 1995, when I was appointed Head of Paediatrics at Royal Darwin Hospital. Although I had trained in Sydney and worked as a paediatrician in Newcastle, this had not really exposed me to the unique issues of northern Australia. Similarly, my extensive experience in tropical and developing country paediatrics – while useful in understanding the diseases – was more of a hindrance than a help in understanding the social determinants of poor health in the Indigenous context. I had been working in Malawi, one of the poorest countries in the world with very high rates of child mortality and high rates of human immunodeficiency virus infection for which there was no treatment available at the time because of the high cost of anti-retrovirals. From that context, it was hard to avoid the feeling that the Indigenous population was not working hard enough to improve their health status. I was struck by the almost universal goodwill and dedication of health professionals in Indigenous health to improve the health of the Indigenous population in the north. So, from my African context, it appeared that this goodwill and the relatively enormous resources available would make it a simple task to improve child health outcomes. It did not take me long to appreciate the complexity of the problem and realise that ‘blaming the victims’ was unhelpful. Although I rarely encountered hostility from the Indigenous population either in the hospital or on outreach to communities, there was considerable passive resistance – perhaps understandable from the historical context – which was hard to deal with.
But by far, the hardest thing to deal with, however, was the politics, which seemed to always get in the way or get it wrong. Much of the problem seemed to be emanating from Canberra and liberal opinion ‘down south’ where the rhetoric conflicted with the reality on the ground. Similarly, Indigenous activists from ‘down south’ uniformly blamed the government and health departments for everything, which was equally unhelpful. Local research, particularly on nutritional and renal interventions, indicated that communication was much more problematic than it seemed, because Indigenous people with low literacy did not really understand the underlying concepts in medicine. Successful interventions in changing behaviour were more related to forming close relationships with Indigenous people than pushing health education messages at them.
I was fortunate to have had Professor Janice Reid as anthropology teacher during my MPH degree at the University of Sydney, as she made frequent reference to the community of Yirrkala where she did her PhD fieldwork. This was one of the communities that I visited regularly as part of the excellent paediatric outreach programme instituted by the late Alan Walker. I remember well my first visit to Yirrkala. The very first patient was a severely handicapped adolescent girl with congenital hypothyroidism who had not been given thyroxine during infancy, so had suffered the consequences. Coincidentally, the fourth patient was a few-week-old infant whose neonatal screening test and later thyroid function tests showed evidence of congenital hypothyroidism, but she was not yet on treatment. Her aunt and carer was a health worker, so it seemed an ideal opportunity to prevent what had happened to the adolescent girl, my first patient. She was still present in the clinic, so I used her to illustrate the consequences of non-adherence to thyroxine, explaining the biology underlying the disease. However, the aunt – despite being a health worker – seemed somewhat recalcitrant, mentioning cultural factors. However, she eventually agreed after almost an hour of discussion to ensure that the drug would be given to the child daily. One of the male nurses at the clinic, Steve Murdoch – who later trained as a doctor at the Northern Territory Clinical School of Flinders University – also agreed to monitor adherence to treatment.
Steve contacted me within a few weeks to inform me that the child was not taking thyroxine and was now lethargic with a hoarse voice. Needless to say, I was baffled by this experience. I was quite familiar with cultural constraints to health from my experience in Africa and the Pacific Islands. I had come to understand in Zimbabwe, for example, that the decision to cease lactating by a young mother was made by elder women, and the health benefit of re-lactation (as formula milk was too expensive and risky) was dwarfed by the risk of social ostracism of that family for infringing the elder women's instructions. However, I could not understand the cultural factors underlying refusal to administer thyroxine to an infant who would end up with brain damage as a consequence of not taking the medication. It was clear that there was no taboo against the medication, as the carer allowed the nurse to give it to the child. It was as a result of this experience that – following consultation with a paediatric endocrinologist in Brisbane, Mike Thomsett – we instituted twice-weekly directly administered thyroxine at home by the health centre nursing staff for all Indigenous children with hypothyroidism. We encountered no resistance to this approach, which was highly successful.
It is easy to misuse this anecdote to ‘blame the victims’, but that was not the point of telling it. It illustrates the passive hostility to mainstream culture in Aboriginal communities in the north – in this case, the resistance was to Western medicine. One could cite many similar examples of non-adherence to rheumatic fever prophylaxis, epilepsy treatment and transplant protocols. Immunisations, however, have been more of a success story, where coverage rates are much higher in Aboriginal children than other children in the Northern Territory because health centres actively seek out children requiring vaccines, rather than just vaccinating those who request it. Of course, ‘non-compliance’ is not unique to the Indigenous population, but there were unique aspects to the issue of a cultural nature that bordered on self-harm or child abuse. The views of white health professionals on these issues tended to be highly polarised, with most making excuses or explaining it in terms of the dreadful colonial experience of Indigenous Australians, whereas a few invoked racist stereotypes. The former view is often described in terms of ‘gatekeeping’ and has been well described in a recent book by the anthropologist Tess Lea, entitled Bureaucrats and Bleeding Hearts: Indigenous Health in Northern Australia.1 In Africa, this attitude is often called ‘white man's burden’, which is an important constraint to coping with a new culture. It plays on historical guilt, which is counterproductive.
Another non-Aboriginal anthropologist, Peter Sutton, who has high credibility because of his long experience in Cape York, has spoken out strongly about neglect and abuse of children in northern Australian Indigenous communities in his recent book: The Politics of Suffering: Indigenous Australia and the End of the Liberal Consensus.2 Indigenous leaders such as Noel Pearson, Marcia Langton and Mick Dodson have also been vocal about these issues of child abuse and neglect, also stressing the need for high-quality education for Indigenous children. One of the first scientists to document the importance of maternal education for child health in developing countries was the Australian demographer, John Caldwell.3 It was only much later that it was appreciated that this also applied to Indigenous child health in Australia, despite low mortality rates. We must better integrate Indigenous people in northern Australian communities into mainstream Australian society – as we have for migrants – but a precondition is better educational levels.
Not only was there a high prevalence of hospital admissions for diarrhoeal disease in the Top End, but also, 70% of cases were complicated by moderate to severe dehydration, hypokalaemia and/or acidosis. It was casually assumed that this was typical of the developing world, but I knew that it was very different from what I had experienced in poor countries. Consequently, my research focused upon trying to understand the high prevalence and complication rates of diarrhoeal disease. Some believed that there was a high prevalence of renal tubular acidosis in Aboriginal children, but this had never been adequately documented, and we did not find this to be true. Because our previous research in Malawi had examined the intestinal mucosal integrity using dual sugar permeability ratios,4–7 we acquired an high performance liquid chromatography' to study permeability of Aboriginal children with and without diarrhoea. Our initial findings are summarised in Figure 1. This not only documented the high permeability ratios in Aboriginal children with acute diarrhoeal disease (geometric mean Lactulose/Rhamnose ratio = 20.8; confidence interval (CI) 17.7–24.3, with severe diarrhoea), but also showed high permeability ratios in apparently well Aboriginal children (geometric mean L/R ratio = 4.5; CI 3.8–5.3, compared with 2.5; CI 1.8–3.4, for non-Indigenous controls). This abnormal permeability in well Aboriginal children indicated impairment of mucosal integrity in absorptive and barrier functions, which is called tropical or environmental enteropathy.9–12 The addition of an acute diarrhoeal episode resulted in villus atrophy with loss of lactase, leading to severe osmotic diarrhoea upon breastfeeding.
In addition to permeability ratios, we also measured nitric oxide levels and stool cultures, and microscopy and DNA probes. These investigations revealed that Cryptosporidium, Strongyloides, rotavirus and enteroaggregative E. coli were the key contributors to the severe manifestations of acute gastroenteritis in Aboriginal children, particularly the parasitic causes.13 However, because of the capacity for catch-up growth, it was clear that the high rates of failure to thrive were more related to the underlying enteropathy and quality of child care. This led to a systematic review of hygiene interventions, revealing strong evidence of the effect of education and hand washing with soap in preventing diarrhoeal disease among children. In the largest well-designed study, children living in households that received plain soap and encouragement to wash their hands had a 53% lower incidence of diarrhoea (95% CI, 0.35, 0.59). There is some evidence of an effect of education and other hygiene interventions, as well as the provision of water supply, sanitation and hygiene education on reducing rates of diarrhoeal disease.14 Thus, there was a renewed recognition of the importance of hygiene, housing and child care in improving outcomes in Aboriginal child health.
Because I had had a great deal of experience in treating severe malnutrition in Africa and the Caribbean, I was very keen on making a contribution to growth issues in Aboriginal children. Although we only rarely had cases of marasmus and kwashiorkor, there were a lot of wasted children who were referred to hospital for feeding up because of growth failure. With the use of the CDC 2000 reference standards, many of the children were inappropriate referrals for hospital feeding because of misclassification of the degree of wasting or the failure to thrive (FTT) because of stunting only. I felt rather ambivalent about flying children to hospital for nasogastric feeding as treatment of FTT when they were otherwise well without anorexia and at low risk of mortality and morbidity. It seemed more sensible to prevent FTT in their communities by means of a supplementary feeding programme. Of course, it was obvious that many of the ‘skinny kids’ were toddlers who were being neglected and not fed properly, but supplementary feeding can make feeding easier due its high energy density. Consequently, I submitted multiple grant proposals over my first 6 years in Darwin to numerous donor or research agencies for a supplementary feeding programme to address FTT in Aboriginal children. None was funded. The problem seemed to be objections by Indigenous health reviewers of the grant or programme proposals to what was called ‘soup kitchens’ as increasing dependency.
I was greatly disappointed by this failure to institute a supplementary feeding programme in the Top End, which would have kept community children out of hospital. This was documented indirectly in neonatology, when Ingrid Bucens sent very premature infants home with pre-packaged formula. This was necessary because the mothers would not stay for months in hospital with the infant, so had ceased breastfeeding. The pre-packaging made formula feeding safer, obviating the need for correctly mixing powder and water. What was interesting anecdotally – and clinically very obvious – was that these formula-fed infants thrived much better on formula and did not require frequent hospital admissions, whereas previously, the ward had been full of such preterm infants with FTT and infections. Of course, as paediatricians, we were very keen on promoting breastfeeding, but here was strong evidence that improving nutritional status with formula improved health outcomes. I was equally convinced that a well-organised supplementary feeding programme could do the same for older children as complementary feeding but never got the funding to prove it. I believed strongly that referring children with FTT to hospital for nasogastric feeding was not the right approach, and health/nutrition educational approaches alone had clearly failed.
Another paradox was the high prevalence of iron deficiency commencing from as early as 2 months in infants who were not low birthweight or with other risk factors. The earliest manifestation was a low mean corpuscular volume (MCV), but many had also dropped their haemoglobin to 95–105 g/L by 4 months of age. Because adherence to oral iron was problematic,15 we had resorted to intramuscular iron injections. However, many of these infants continued with low haemoglobins and MCVs despite iron repletion. We also measured soluble transferrin receptor in an attempt to differentiate true iron deficiency from the anaemia of infection but found it unhelpful.16 We also tried to measure hepcidin levels, but the kit available had low reproducibility. However, I still believe that the high burden of disease in Aboriginal infants living in poor hygienic circumstances results in chronically up-regulated hepcidin levels, which sequester iron in the reticulo-endothelial system and decrease intestinal iron absorption.17–21 Although a drug may be developed to block this detrimental up-regulation, the solution is really to decrease exposure to infection through less overcrowding and improved hygiene and child care.
When I moved to Far North Queensland, there was much less failure to thrive and enteropathy because of improved educational and hygiene levels. However, there were much more fetal alcohol spectrum cases, as documented by Richard Heazlewood, who started the paediatric outreach in Far North Queensland 27 years ago.22,23 It is hard to exaggerate the devastating impact that this condition is having on Indigenous people in Far North Queensland. In addition to the obvious cases of microcephaly, growth failure, dysmorphic facial features and developmental delay, there are many subtle cases of intellectual disability and behavioural problems related to alcohol in pregnancy. This is adding to the other problems of conductive hearing loss, malnutrition and neglect, which also interfere with good educational outcomes in Indigenous children in the north. There is now little doubt that schooling is an integral part of the attempt to improve health outcomes in the Indigenous population and that it will take many years to improve educational outcomes.