The Neonatal Encephalopathy Working Group reviews data on neonatal encephalopathy (NE) to improve services and outcomes for babies. Despite advances in obstetric and neonatal care, NE remains a major cause of brain injury in new-born infants. Of those infants affected by NE, 10-60 percent will die and at least 25 percent of those surviving will have long term neurological complications resulting in chronic conditions such as cerebral palsy, neuro-developmental delay or retardation, blindness, hearing deficits and epilepsy. Although there are a number of population studies looking at the prevalence of NE internationally, there is currently no local data available.

To establish the true size of the problem of NE in New Zealand, the group’s priority is to collect data on its prevalence in New Zealand. It is hoped that predictors and/or mediators of NE will be identified to allow the development of effective preventative and remedial therapies to help reduce NE in New Zealand.

Members

Representation has been drawn from a wide range of health professionals and covers expertise in paediatrics, obstetrics & gynaecology, clinical epidemiology, midwifery, neonatology and health management.

  • Dr Jutta van den Boom (Chair), neonatal paediatrician, Waitemata DHB
  • Dr Kitty Bach, neonatal paediatrician, Auckland DHB
  • Dr David Bailey, obstetrician and gynaecologist, Northland DHB
  • Dr Malcolm Battin, neonatal paediatrician, Auckland DHB
  • Ms Karen Bennington, neonatal nurse practitioner, Capital & Coast DHB
  • Robin Cronin, midwife, Counties Manukau Health
  • Ms Anne Jackson, neonatal nurse practitioner, Canterbury DHB
  • Ms Suzanne Miller, midwife, Wellington
  • Mr John Tait (chair, PMMRC)
  • Dr Kristy Wolff, obstetrician and gynaecologist, Northland DHB

What is Neonatal Encephalopathy?

Neonatal Encephalopathy (NE) is “a clinically defined syndrome of disturbed neurological function in the earliest days of life in the term infant, manifested by difficulty with initiating and maintaining breathing, depression of tone and reflexes, sub normal level of consciousness and often seizures”. *

NE occurs in approximately 0.3–0.6 percent of live births and usually affects the full term infant. The terminology NE is preferred to Hypoxic Ischemic Encephalopathy (HIE) as it is not always possible to document a significant hypoxic-ischemic insult and there are potentially several other aetiologies.

Specifically, it is important to exclude metabolic disease, infection, drug exposure, nervous system malformation and neonatal stroke as possible causes of the encephalopathy. The requirement for investigation to exclude these possibilities will depend on the presentation, history and clinical features of the individual case.

* Clinical stages of encephalopathy are described on page 6 in the Newborn Clinical Network Consensus Statement for Treatment of Neonatal Encephalopathy

NE Data Collection

Paediatricians who report they have cared for an infant with NE will be contacted to complete a data collection form. Lead Maternity Carers (LMCs) will also be contacted to provide further information.

The data collection forms provide detailed information on both mother and baby, and will be securely stored.

Data collection steps

  1. Completion of the PMMRC Mother Rapid Reporting Form for a baby diagnosed with NE- by the Lead Maternity Carer.
  2. Completion of the PMMRC Baby Rapid Reporting Form for Surviving Infant with Moderate to Severe Neonatal Encephalopathy by the attending paediatrician

What will this mean for me as a paediatrician?

If you have cared for a baby identified as having Moderate or Severe NE complete the PMMRC Baby Rapid Reporting Form for Surviving Infant with Moderate to Severe Neonatal Encephalopathy online. From 2016 the Neonatal Encephalopathy Working Group (NEWG) widened the inclusion criteria for the NE cohort and will include babies from 35 weeks gestation at birth.

The website for completing the data collection forms can be accessed here. This form shouldn’t take more than 20 minutes to complete.

What will this mean for me as a Lead Maternity Carer?

As the LMC of a baby that has been identified as having NE, you will receive the PMMRC Mother Rapid Reporting Form for a Baby Diagnosed with NE, to be completed and returned to the coordinator (details of where to send it will be on the form). This form is similar to the current PMMRC rapid reporting form and should also be quick and easy to complete. The form can also be completed online.  

Information for the family of a baby diagnosed with NE

The following leaflet is available for families on this data collection: Information about the Neonatal Encephalopathy Working Group.

Terms of reference

Download the Neonatal Encephalopathy Working Group terms of reference (86 KB, pdf)

Last updated 09/01/2019