Prospective cohort study of neurodevelopmental outcomes following extreme neonatal hyperbilirubinaemia in Australia.

AIM: This study aimed to establish the incidence and nature of neurodevelopmental outcomes following extreme neonatal hyperbilirubinaemia in an Australian cohort. METHODS: A prospective cohort study of neurodevelopmental outcomes up to 3 years of age of infants born between 2010 and 2013 at ≥34 weeks gestation, with total serum bilirubin ≥450 µmol/L and/or clinical signs of acute bilirubin encephalopathy. Outcome measures comprised neurological examination, Bayley Scales of Infant and Toddler Development, 3rd edition and Ages and Stages Questionnaire, 3rd edition. RESULTS: The Australian estimated incidence of kernicterus is 0.35 per 100 000 live births. Within the follow-up cohort of 26, three children have clinical neurodevelopmental impairment: one has gross motor function classification system level 4 cerebral palsy, audiological deficiency and visual impairment; the second has gross motor function classification system level 1 cerebral palsy and the third has global developmental delay with autism spectrum disorder. Mean Bayley Scales of Infant and Toddler Development, 3rd edition scores were: cognition 10.3 (SD 1.5), receptive communication 9.4 (SD 1.8), expressive communication 9.2 (SD 2.4), fine motor 10.4 (SD 2.6) and gross motor 9.2 (SD 2.3). CONCLUSION: The Australian national rate of kernicterus compares favourably with global estimates. Future preventative strategies in this context include universal neonatal hyperbilirubinaemia assessment and mandated adverse outcome reporting and investigation.

Prospective Surveillance of Extreme Neonatal Hyperbilirubinemia in Australia.

OBJECTIVES: To determine the incidence, causes, associated factors, and short-term outcomes of extreme neonatal hyperbilirubinemia in Australia in order to identify opportunities for prevention. STUDY DESIGN: This was a prospective population-based surveillance study in collaboration with the Australian Pediatric Surveillance Unit between April 1, 2010, and March 31, 2013. Case definition was: infants >34 weeks gestation with a peak total serum bilirubin ≥450 µmol/L and or clinical evidence of bilirubin encephalopathy. Clinicians completed questionnaires detailing demographic and clinical data including: peak serum bilirubin, signs of bilirubin encephalopathy, etiology, associated pathology, management, and short-term outcomes. RESULTS: The questionnaire return rate was 95%, and 87 infants met the case definition. The Australian incidence of extreme neonatal hyperbilirubinemia is estimated to be 9.4/100,000 live births. Main etiologies were: idiopathic ABO blood group incompatibility, glucose-6-phosphate dehydrogenase deficiency, and Rhesus isoimmunization. There were no significant differences in short-term outcomes between inpatient and outpatient cases. Cases with a hemolytic etiology were significantly more likely to have extremely high levels of hyperbilirubinemia (P < .002). CONCLUSION: The incidence of extreme neonatal hyperbilirubinemia in Australia is comparable with previous studies. Robust pre- and post-discharge assessment and management strategies of neonatal hyperbilirubinemia are essential to prevent neurodisability. Universal glucose-6-phosphate dehydrogenase screening and serial bilirubin monitoring may optimize preventative strategies.

Implementation and evaluation of an individualized developmental care program in a neonatal intensive care unit.

PURPOSE: This study aims to detect differences in outcomes for very preterm infants after the introduction of developmental care in a neonatal nursery, and to evaluate the effect of developmental care on parental well-being. DESIGN AND METHODS: Prospective before and after cohort study of very preterm babies, with education for all staff between cohorts. RESULTS: No significant differences were found between cohorts for short-term outcomes for babies or parental anxiety levels or depression. All infants scored within normal temperament ranges at 4 months. PRACTICE IMPLICATIONS: Developmental care is a safe practice model. The interdisciplinary study facilitated professional development and increased the knowledge of nurses.

Breast milk donation after neonatal death in Australia: a report.

Lactation and breast milk can hold great value and meaning for grieving mothers who have experienced a recent death of an infant. Donation to a human milk bank (HMB) as an alternative to discarding breast milk is one means of respecting the value of breast milk. There is little research, national policy discussion, or organizational representation in Australia on the subject of breast milk donation after infant death. On 29 November 2013 the Mercy Hospital for Women in Melbourne, Australia hosted Australia's first National Stakeholder Meeting (NSM) on the topic of milk donation after neonatal death. The NSM drew together representatives from Australian HMBs, neonatal intensive care units (NICUs) currently using donor human milk, and Australia's chief NICU parent support organization. The NSM was video-recorded and transcribed, and analyzed thematically by researchers. This article reports the seven dominant themes discussed by stakeholders during the NSM: the spectrum of women's lactation and donation experiences after infant death; the roles of the HMB and NICU in meeting the needs of the bereaved donor; how bereaved mothers' lactation autonomy may interface with a HMB's donation guidelines; how milk donation may be discussed with bereaved mothers; the variation between four categories of milk donation after neonatal death; the impact of limited resources and few HMBs on providing donation programs for bereaved mothers in Australia. This article provides evidence from researchers and practitioners that can assist HMB staff in refining their bank's policy on milk donation after infant death, and provides national policy makers with key considerations to support lactation, human milk banking, and bereavement services nation-wide.

The impact of evidence-based education on a perinatal capacity-building initiative in Macedonia.

CONTEXT: The perinatal mortality rate (PMR) in Macedonia is among the highest in Europe. The World Bank supported a consultant (HEJ) to collaborate with a Macedonian team to develop a national perinatal strategy with the goal of reducing the PMR. Education was given priority in the form of a hospital-based initiative to develop the capacity of health professionals to introduce evidence-based perinatal practice into 16 participating hospitals. A "train the teachers" approach was used, with trainees introduced to modern education and clinical practice in Sydney and subsequently supported to train their colleagues in Skopje. OBJECTIVES: To describe the development, implementation and evaluation of the educational intervention. METHODS: A curriculum, based on specific Macedonian needs, was developed in order to integrate teaching in the knowledge, skills and attitudinal domains of learning, using small group, interactive techniques. Twenty-five Macedonian doctors and nurses participated in 4-month (phase 1a) and 6-month (phase 1b) teaching programmes at a tertiary perinatal unit in Sydney. Australian staff conducted 4 2-week modules for 36 trainees in Macedonia (phase 2). The phase 1 trainees conducted 8 modules for 57 colleagues in Skopje (phase 3). The intervention was evaluated by trainee questionnaires, assessments of competence, changes in hospital practice and pre- (1997-99) and post-intervention (2000-01) comparisons of PMR. RESULTS: A total of 115 doctors and nurses graduated from the programme. Positive responses to the education programme exceeded 80%. Evidence-based practice in 16 participating hospitals (covering 91% of all Macedonian births) was verified in 6 key areas of neonatology. The PMR fell significantly from 27.4 to 21.5 per 1000 births (RR 0.79, 95% CI 0.73, 0.85). The early neonatal death rate in babies weighing over 1000 g fell by 36%. CONCLUSIONS: The intervention has increased the capacity of Macedonians to practise best-evidence perinatal medicine and improve outcomes. Sustainability is predicted by the "train the teachers" approach, with concurrent strengthening of the infrastructure and organisational framework.