Neonatal Encephalopathy Working Group - Perinatal Information - Perinatal and Maternal Mortality Review Committee

Neonatal Encephalopathy Working Group
The purpose of the Neonatal Encephalopathy Working Group is to review New Zealand data on NE to improve services and outcomes for babies. Despite advances in obstetric and neonatal care, NE remains a major cause of brain injury in the full-term newborn infant. Of those infants affected by NE, 10-60% will die and at least 25% 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 first priority of the group is to collect data on the prevalence in New Zealand in order to form a national data set. It is hoped that predictors and/or mediators of NE will also be identified, potentially allowing the development and implementation of effective preventative and remedial therapies with a view to reducing both the severity and occurrence of NE in New Zealand.

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

Dr Malcolm Battin - Chair, NE Working Group; Neonatal Paediatrician
Dr Astrid Budden - Obstetrician and Gynaecologist
Professor Cindy Farquhar - Chair PMMRC, Obstetrician and Gynaecologist, Clinical Epidemiologist
Ms Anja Hale - Member PMMRC; Neonatal Nurse Specialist
Ms Deborah Harris - Neonatal Nurse Specialist
Ms Tomasina Stacey - Midwife
Dr Thorsten Stanley - Paediatrician; Senior Lecturer
Ms Rachel Taylor - Team Manager, Accident Compensation Corporation
Dr Alex Wallace - Paediatrician

What is NE?
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 respiration, depression of tone and reflexes, sub normal level of consciousness and often seizures”. *

NE occurs in approximately 3.5 - 6/1000 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.

NE Data Collection
Paediatricians who report that they have cared for an infant with NE will be contacted to complete a data collection form. The Lead Maternity Carer(s) will also be contacted by the investigator(s) to provide further information.

The data collection forms provide detailed information on both mother and baby. Data will be stored in both electronic and paper in a secure office.

This observational audit has been designed in consultation with the Paediatric Surveillance Unit (PSU), and has been approved under expedited review by the Multi-region Ethics Committee.

Data collection steps

The inclusion of NE as one of the conditions on the Perinatal Surveillance Unit Reporting Card.
Completion of the PMMRC Mother Rapid Reporting Form for a Baby Diagnosed with NE- by the Lead Maternity Carer.
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?
The PSU will ask you to identify any cases of NE in your unit. You will then receive the PMMRC Baby Rapid Reporting Form for Surviving Infant with Moderate to Severe Neonatal Encephalopathy to be completed and returned (details where to send it will be on the form). This form is just a few pages long and 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.

Footnote
* See: www.adhb.govt.nz/newborn/Guidelines/Neurology/NE.htm