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Child health

Serious gaps in the investigation of sudden unexpected deaths in infancy in Australia

SUDI investigations should be led by coroners, supported by experienced paediatric pathologists Jeffery and colleagues examined how sudden unexpected deaths in infancy (SUDI) are investigated in Australia in a questionnaire‐based study,1 reported in this issue of the MJA. They unsurprisingly exposed gaps in the process and unsuitable approaches to investigating these deaths. As Jeffery and colleagues note, the definition of SUDI encompasses all cases in which an infant dies (or suffers a collapse that leads to death) before the age of twelve months, the death could not have been anticipated 24 hours earlier, and no medical cause is apparent. The SUDI definition includes all such deaths, whether they are subsequently explained or not, and thus encompasses sudden infant death syndrome (SIDS), a diagnosis that requires a complete investigation, including history, death scene investigation, and full autopsy. In the absence of generally recognised causes, the investigation of SUDI is a special situation: each case is a subject of research or a problem to be solved. Most cases in Australia fall within the purview of the police and the state coroner. While their questionnaire methodology had inherent limitations, Jeffery and colleagues found that police‐led investigation fell short of evidence‐based standards. Obvious problems are related to inadequate resources and the lack of a national approach to investigating unexpected deaths in infancy, including a national autopsy protocol. In some states, forensic institutions perform autopsies under the jurisdiction of the coroner. Only one employs a paediatric pathologist for this purpose, despite the fact that SUDI autopsy is a specialist procedure. Problems arise when pathologists without relevant specialist expertise overlook key aspects or misinterpret important findings; this can result in unsafe legal outcomes. In 1989, the late SIDS expert forensic pathologist Professor John Hilton discussed the fact that the investigation of SIDS is encumbered by unusual limitations.2 These limitations are pertinent to the study by Jeffery and colleagues, including ethical questions regarding consent for obtaining and retaining tissue, and difficulty in obtaining suitable control material for meaningful research. The specific causes of many cases of SUDI and SIDS remain unknown, despite the resources of 21st century science. Limitations to their investigation may play a role, but there are a number of plausible research hypotheses, especially that centred on the homeostatic control of breathing, arousal, and cardiac function.3 However, it is worrying that few neuropathological or neurotransmitter findings have been linked with SIDS risk factors.4 In contrast, the list of risk factors linked with infection‐based hypotheses (eg, the bacterial toxin hypothesis)5,6 is extensive,7,8 especially strong associations with prone sleeping and the type of sleeping surface.9,10,11 Achieving clarification may require, as demanded by Jeffery and colleagues, the implementation of core components of international standards, such as those recommended by the Kennedy Report,12 including a standardised autopsy protocol. Doing so would maximise the probability that the cause of death is elucidated, and ensure that risk factors are identified, parents and families receive immediate and ongoing support, and the consequences of incorrect diagnosis are avoided. SUDI investigations should be led by coroners, supported by experienced paediatric pathologists playing pivotal roles. A national database of SUDI data could also be helpful for research and monitoring standards, but this will require dedicated financial support.

Paul N Goldwater

Mja2 51884
Infectious diseases Letters 20 February 2023 Open Access

Balancing the medical and social needs of children during the COVID‐19 pandemic

To the Editor: In a recent Editorial,1 Grimwood and Chang cited a review of long COVID in children and adolescents,2 and wrote that symptoms are similar for those with and without evidence of severe acute respiratory syndrome coronavirus 2 (SARS‐CoV‐2) infection. But this is an inaccurate description of the review's findings. Cases were more likely to experience persistent symptoms than controls in the majority of studies reviewed.2 The difference in prevalence might be even greater than reported owing to the well documented underdetection of coronavirus disease 2019 (COVID‐19) in children,3 resulting in misclassification of cases as controls. A growing body of evidence indicates children are more affected by COVID‐19 than initially thought. A recent US Centers for Disease Control and Prevention (CDC) analysis of 1.4 million children aged under 12 years and 1.7 million adolescents aged 12–17 years found increased rates of asthma, myocarditis and cardiomyopathy, cardiac dysrhythmias, diabetes, renal failure, venous thromboembolism, and coagulation disorders in children with laboratory‐confirmed COVID‐19 compared with children without COVID‐19. These increased risks (excluding asthma) were also experienced by adolescents with COVID‐19, who were additionally at increased risk of pulmonary embolism.4 Although uncommon or rare, such outcomes suggest children are not spared the cardiovascular and metabolic sequelae of COVID‐19. Recent research using low field magnetic resonance imaging (MRI) revealed persistent pulmonary dysfunction in non‐hospitalised children and adolescents (mean age, 11±3 years) who had recovered from COVID‐19 (n = 29) or had long COVID (n = 25). Despite all children having morphologically normal lungs (except for one recovered child), ventilation and perfusion (V/Q) matching was markedly lower in the recovered group (62±19%) and the long COVID group (60±20%) compared with nine healthy controls (81±6%; mean age, 10±3 years).5 Although the MRI study may be limited by selection bias (ie, children with greater symptomatology being more likely to participate), this and similar research indicate the health impact of paediatric COVID‐19 is greater than generally acknowledged. We do not know what the long term impact of SARS‐CoV‐2 infection might be, but the accumulating data are not encouraging. Reinfection is common and SARS‐CoV‐2 spreads readily in schools in the absence of mitigation measures, such as the use of masks, portable HEPA air cleaners, and improved ventilation. Notably, better ventilation has wider benefits, including improved academic performance. A poorly ventilated classroom can be equivalent to a student skipping breakfast.6 The COVID‐19 pandemic is not over. Ongoing commitment to a public health strategy informed by the precautionary principle is required. This will deliver wide‐ranging social, economic and health benefits.

Zoë Hyde

Mja2 51808
Infectious diseases Letters 5 September 2022 Free

Congenital cytomegalovirus: the case for targeted infant screening in Australia

To the Editor: We write in response to Reid and colleagues’1 article on congenital cytomegalovirus (CMV). While many countries worldwide have established congenital CMV screening programs, Australia urgently needs to recognise the importance of targeted congenital CMV screening and tracking its outcomes. Our 2019–2020 study tested the feasibility and acceptability of a parent‐completed targeted congenital CMV saliva polymerase chain reaction (PCR) screening program in Victoria.2 Parents of infants who did not pass their newborn hearing screening at four Victorian maternity hospitals completed their infants’ saliva swabs in the hospital or at home. The program was feasible with a 76% participation rate, and all 96 swabs (100%) were completed within the required 21days from birth, despite the majority being completed at home. Furthermore, more than 90% of families found the screen easy to do, thought it was a good idea, and were glad their baby had congenital CMV screening. However, there were challenges: false positive screens due to CMV contamination in breast milk, and excessive time taken from completing the screen to return of results due to reliance on the only laboratory in the state accredited to process saliva CMV PCR. We now have the means to overcome these challenges, determine whether universal congenital CMV screening in Australia is warranted, and systematically track outcomes of targeted congenital CMV screening. For 2years from October 2021, Murdoch Children’s Research Institute’s Generation Victoria (GenV) is recruiting a whole‐of‐state infant–parent cohort, collecting over 110000 saliva swabs from newborns to test for CMV using novel CRISPR technology at the Walter and Eliza Hall Institute of Medical Research.3 Our study, funded by the National Health and Medical Research Council, will determine the population prevalence of congenital CMV, develop a rapid bedside point‐of‐care test for congenital CMV screening, and establish whether universal congenital CMV screening is cost‐effective. In addition, the Australasian Congenital CMV Registry has been recently established to track outcomes of congenital CMV.4 These initiatives will pave the way for Australia to emerge as a leader in congenital CMV screening, better recognise this undetected condition of public health importance, and provide personalised care to affected children.

Emma Webb · Cheryl A Jones · Valerie Sung

Mja2 51682
Infectious diseases Research 8 August 2022 Open Access

COVID‐19 in New South Wales children during 2021: severity and clinical spectrum

Community support for children with special care needs could reduce the number of COVID-19-related hospitalisations

Phoebe Williams · Archana Koirala · Gemma L Saravanos · Laura K Lopez · Catherine Glover · Ketaki Sharma · Tracey Williams · Emma Carey · Nadine Shaw · Emma Dickens · Neela Sitaram · Joanne Ging · Paula Bray · Nigel W Crawford · Brendan McMullan · Kristine Macartney · Nicholas Wood · Elizabeth L Fulton · Christine Lau · Philip N Britton

Mja2 51661
Sexual health Letters 1 August 2022 Free

Parental consent and the treatment of transgender youth: the impact of Re Imogen

To the Editor: We read with interest the article by Kelly and colleagues,1 In our opinion, the authors’ statement “Access to timely gender‐affirming care is associated with improved mental health outcomes and overall wellbeing” is not well supported by the two citations provided. The first citation is a systematic review by Rew and colleagues.2 A critique of this review was recently published.3 Rew et al, in response, clarified that they did not make any causal statements about puberty blockers and reported improved mental health outcomes, but believe their findings warrant more rigorous longitudinal studies.4 Kelly and colleagues’ second citation is a systematic review by Mahfouda et al.5 This review concluded there is only scarce and preliminary evidence that hormonal and surgical gender‐affirming treatments in adolescents are associated with mental health benefit and improved quality of life. The available evidence was described as having multiple methodological limitations and being at medium to high risk of bias. The authors called for further urgent research to clarify long term outcomes on psychological functioning and safety. Importantly, two recent systematic reviews by the United Kingdom’s National Institute for Health and Care Excellence found that the results of the studies investigating the benefits or adverse effects of puberty blockers and gender‐affirming hormones are of very low certainty and, as the studies themselves may not be reliable, any identified changes could be due to confounding, bias or chance.6,7 The recently published interim report of the UK’s Cass Review also noted that there are different views on the benefits versus harms of early social transition and more information about outcomes is required.8 In conclusion, the literature does not support there being a robust evidence base for the gender‐affirming social, medical and surgical interventions for children and adolescents. Rather, the literature highlights the scarce and low quality evidence and the urgent need for more high quality evidence. In any consideration of the processes of informed consent and/or court consent it would seem imperative that there is acknowledgement of the uncertain evidence base underpinning these interventions. Thus, it is of concern that Kelly and colleagues fail to do this.

Alison Clayton · Roberto D’Angelo · Patrick Clarke

Mja2 51643
Indigenous health Perspectives 4 July 2022 Open Access

The need for a roadmap to guide actions for Aboriginal and Torres Strait Islander adolescent health: youth governance as an essential foundation

The current lack of a national strategy for Indigenous adolescent health in Australia is a glaring gap

Seth Westhead · Quinton Appleby · Brittney Andrews · Tina Brodie · Alex Brown · Karla Canuto · Josh Cooke · Mahlia Garay · Thomas Harrington · Djai Hunter · Corey Kennedy · Jaeda Lenoy · Olivia Lester · Hannah McCleary · Odette Pearson · Lorraine Randall · Rachel Reilly · Hamish Rose · Daniel Rosendale · Jakirah Telfer · Peter Azzopardi

Mja2 51592

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