This page is mainly for paediatricians or lead maternity carers. It describes the work of the Perinatal and Maternal Mortality Review Committee’s (the PMMRC’s) Neonatal Encephalopathy (NE) Working Group and provides actions for paediatricians or lead maternity carers.
Links to all forms are included or visit www.otago.ac.nz/pmmrc to download. You will be required to register on the front page.
Neonatal Encephalopathy Working Group
NE is a clinically defined syndrome of disturbed neurological function within the first week of life, manifested by difficulty in initiating and maintaining respiration, depression of tone and reflexes, subnormal level of consciousness and often seizures. See below for information on NE staging.
Despite advances in obstetric and neonatal care, NE remains a major cause of brain injury in the term newborn infant.
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, blindness, hearing deficits and epilepsy.[1]
Although several population studies look at the prevalence of NE internationally it is important to collect and report on local data so we can identify where services and outcomes for babies could be improved and make recommendations.
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.
Footnotes
[1] Jacobs SE, Berg M, Hunt R, et al. Cooling for newborns with hypoxic ischaemic encephalopathy. Cochrane Database Syst Rev 2013, Issue 1. Art. No. CD003311. DOI: 10.1002/14651858.CD003311.pub3. PMID: 23440789; PMCID: PMC7003568.
The NE Working Group was established by the PMMRC in late 2007 to collect, report on and review all Aotearoa New Zealand data on NE. Members of the group are listed below.
To establish the true size of the problem of NE in Aotearoa New Zealand, the group’s priority is to collect data on NE prevalence to form a national data set and identify predictors and/or mediators of NE. This could potentially lead to effective preventative and remedial therapies being developed and implemented to reduce the occurrence and severity of NE in Aotearoa New Zealand.
An ongoing observational audit began in 2010 to identify areas for development and implementation of effective preventative and remedial therapies with a view to reducing both the occurrence and severity of NE.
Data gathered for audit is used to identify:
- the number of newborn infants with moderate to severe NE in Aotearoa New Zealand
- the distribution of affected infants in terms of geographic location and spread between level 2 and level 3 neonatal units
- possible predictors of the condition and how affected infants are managed.
NE was included as one of the conditions on the New Zealand Paediatric Surveillance Unit (NZPSU) monthly reporting card from January 2010 to 2012.
Since 2013 identification of NE cases has been by key clinicians in neonatal and special care baby units through:
- completion of the PMMRC Baby Rapid Reporting Form for an Infant with Moderate to Severe Neonatal Encephalopathy by the attending paediatrician
- completion of the PMMRC Mother Rapid Reporting Form for a Baby Diagnosed with Neonatal Encephalopathy by the lead maternity carer
- collection of patient records (mother and baby) from heath providers and lead maternity carers for national case review.
Since 2016 babies born from 35–37 weeks gestation have been included in this audit so we can document the increased use of hypothermia in infants less than 37 weeks gestation who have a clear hypoxic ischaemic insult.
If you are a paediatrician and have cared for a baby identified as having moderate and severe NE, please complete the PMMRC Baby Rapid Reporting Form for an Infant with Moderate to Severe Neonatal Encephalopathy online. You will be required to register on the front page and then the form should take less than 20 minutes to complete.
Figure 1: Staging of NE by SARNAT score[1]
| NE staging | Stage 2/moderate | Stage 3/severe |
| Level of consciousness | Lethargic or obtunded | Stuporous |
| Muscle tone | Mild/moderate hypotonia | Flaccid |
| Posture | Strong distal flexion | Intermittent decerebration |
| Stretch reflexes | Overactive | Decrease or absent |
| Suck | Weak or absent | Absent |
| Moro | Weak/incomplete high threshold | Absent |
| Autonomic function | Generalised parasympathetic overactivity | Both systems depressed |
| Seizures | Common | Uncommon |
The three clinical stages of encephalopathy are described in Figure 2.[2]
Figure 2: Clinical stages of encephalopathy
| Stage 1 – mild | Duration < 24 hours with hyperalertness Uninhibited Moro and stretch reflexes Sympathetic effects Normal electroencephalogram |
| Stage 2 – moderate | Reduced consciousness Hypotonia Decreased spontaneous movements with or without seizures |
| Stage 3 – severe | Stupor Flaccidity Seizures Supressed brain stem and autonomic functions The EEG may be isopotential or have infrequent periodic discharges |
Footnotes
[1] Sarnat HB, Sarnat MS. 1976. Neonatal encephalopathy following fetal distress. A clinical and electroencephalographic study. Arch Neurol 33: 696–705.
If you are the lead maternity carer of a baby that has been identified as having NE, you will receive details to help you complete the PMMRC Mother Rapid Reporting Form for a Baby Diagnosed with Neonatal Encephalopathy. A paper version of the form is available if you prefer to complete and return this (please contact: PMMRCnationalcoordinator@hqsc.govt.nz). This form is similar to the current PMMRC rapid reporting form and shouldn’t take more than 20 minutes to complete. You may also receive a request for a copy of your lead maternity carer notes.
Individuals are not identified in the reporting process. As with the PMMRC process a full data set is collected but this is de-identified in the report and aggregate data presented so no individual infant or mother will be identified. The investigators, as agents of the PMMRC, are under strict confidentiality obligations under Section 82, Schedule 5 of the Pae Ora (Healthy Futures) Act 2022. The penalty for disclosing personal information is a fine of up to $10,000, and individuals are liable to professional disciplinary proceedings.
The PMMRC and members of the NE Working Group are the only people who have access to raw data and/or clinical records during or after audit.
Following audit, the raw data is transferred to a secure storage unit and is the responsibility of the PMMRC.
The group comprises clinicians involved in the provision of perinatal care and representatives from associated areas. The current members are:
- Dr Jutta van den Boom (Chair), neonatal paediatrician, Te Whatu Ora – Health New Zealand Waitematā
- Dr Kitty Bach, neonatal paediatrician, Te Whatu Ora – Health New Zealand Te Toka Tumai Auckland
- Dr David Bailey, obstetrician and gynaecologist, Te Whatu Ora – Health New Zealand Te Tai Tokerau
- Dr Malcolm Battin, neonatal paediatrician, Te Whatu Ora – Health New Zealand Te Toka Tumai Auckland
- Ms Karen Bennington, neonatal nurse practitioner, Te Whatu Ora – Health New Zealand Capital, Coast and Hutt Valley
- Dr Robin Cronin, midwife, Te Whatu Ora – Health New Zealand Counties Manukau
- Ms Julie Richards, midwifery educator, Te Whatu Ora – Health New Zealand Nelson Marlborough
- Mr John Tait, PMMRC Chair
The group is supported by the PMMRC national coordinator, email: PMMRCnationalcoordinator@hqsc.govt.nz
The following leaflet is available for families on this data collection: Information about the Neonatal Encephalopathy Working Group.
Download the Neonatal Encephalopathy Working Group terms of reference (86 KB, pdf)
About NE
NE is a clinically defined syndrome of disturbed neurological function within the first week of life, manifested by difficulty in initiating and maintaining respiration, depression of tone and reflexes, subnormal level of consciousness and often seizures. See below for information on NE staging.
Despite advances in obstetric and neonatal care, NE remains a major cause of brain injury in the term newborn infant.
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, blindness, hearing deficits and epilepsy.[1]
Although several population studies look at the prevalence of NE internationally it is important to collect and report on local data so we can identify where services and outcomes for babies could be improved and make recommendations.
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.
Footnotes
[1] Jacobs SE, Berg M, Hunt R, et al. Cooling for newborns with hypoxic ischaemic encephalopathy. Cochrane Database Syst Rev 2013, Issue 1. Art. No. CD003311. DOI: 10.1002/14651858.CD003311.pub3. PMID: 23440789; PMCID: PMC7003568.
About the NE Working Group
The NE Working Group was established by the PMMRC in late 2007 to collect, report on and review all Aotearoa New Zealand data on NE. Members of the group are listed below.
To establish the true size of the problem of NE in Aotearoa New Zealand, the group’s priority is to collect data on NE prevalence to form a national data set and identify predictors and/or mediators of NE. This could potentially lead to effective preventative and remedial therapies being developed and implemented to reduce the occurrence and severity of NE in Aotearoa New Zealand.
Data collection
An ongoing observational audit began in 2010 to identify areas for development and implementation of effective preventative and remedial therapies with a view to reducing both the occurrence and severity of NE.
Data gathered for audit is used to identify:
- the number of newborn infants with moderate to severe NE in Aotearoa New Zealand
- the distribution of affected infants in terms of geographic location and spread between level 2 and level 3 neonatal units
- possible predictors of the condition and how affected infants are managed.
NE was included as one of the conditions on the New Zealand Paediatric Surveillance Unit (NZPSU) monthly reporting card from January 2010 to 2012.
Since 2013 identification of NE cases has been by key clinicians in neonatal and special care baby units through:
- completion of the PMMRC Baby Rapid Reporting Form for an Infant with Moderate to Severe Neonatal Encephalopathy by the attending paediatrician
- completion of the PMMRC Mother Rapid Reporting Form for a Baby Diagnosed with Neonatal Encephalopathy by the lead maternity carer
- collection of patient records (mother and baby) from heath providers and lead maternity carers for national case review.
Since 2016 babies born from 35–37 weeks gestation have been included in this audit so we can document the increased use of hypothermia in infants less than 37 weeks gestation who have a clear hypoxic ischaemic insult.
Actions for paediatricians
If you are a paediatrician and have cared for a baby identified as having moderate and severe NE, please complete the PMMRC Baby Rapid Reporting Form for an Infant with Moderate to Severe Neonatal Encephalopathy online. You will be required to register on the front page and then the form should take less than 20 minutes to complete.
Figure 1: Staging of NE by SARNAT score[1]
| NE staging | Stage 2/moderate | Stage 3/severe |
| Level of consciousness | Lethargic or obtunded | Stuporous |
| Muscle tone | Mild/moderate hypotonia | Flaccid |
| Posture | Strong distal flexion | Intermittent decerebration |
| Stretch reflexes | Overactive | Decrease or absent |
| Suck | Weak or absent | Absent |
| Moro | Weak/incomplete high threshold | Absent |
| Autonomic function | Generalised parasympathetic overactivity | Both systems depressed |
| Seizures | Common | Uncommon |
The three clinical stages of encephalopathy are described in Figure 2.[2]
Figure 2: Clinical stages of encephalopathy
| Stage 1 – mild | Duration < 24 hours with hyperalertness Uninhibited Moro and stretch reflexes Sympathetic effects Normal electroencephalogram |
| Stage 2 – moderate | Reduced consciousness Hypotonia Decreased spontaneous movements with or without seizures |
| Stage 3 – severe | Stupor Flaccidity Seizures Supressed brain stem and autonomic functions The EEG may be isopotential or have infrequent periodic discharges |
Footnotes
[1] Sarnat HB, Sarnat MS. 1976. Neonatal encephalopathy following fetal distress. A clinical and electroencephalographic study. Arch Neurol 33: 696–705.
Actions for lead maternity carers
If you are the lead maternity carer of a baby that has been identified as having NE, you will receive details to help you complete the PMMRC Mother Rapid Reporting Form for a Baby Diagnosed with Neonatal Encephalopathy. A paper version of the form is available if you prefer to complete and return this (please contact: PMMRCnationalcoordinator@hqsc.govt.nz). This form is similar to the current PMMRC rapid reporting form and shouldn’t take more than 20 minutes to complete. You may also receive a request for a copy of your lead maternity carer notes.
Privacy
Individuals are not identified in the reporting process. As with the PMMRC process a full data set is collected but this is de-identified in the report and aggregate data presented so no individual infant or mother will be identified. The investigators, as agents of the PMMRC, are under strict confidentiality obligations under Section 82, Schedule 5 of the Pae Ora (Healthy Futures) Act 2022. The penalty for disclosing personal information is a fine of up to $10,000, and individuals are liable to professional disciplinary proceedings.
The PMMRC and members of the NE Working Group are the only people who have access to raw data and/or clinical records during or after audit.
Following audit, the raw data is transferred to a secure storage unit and is the responsibility of the PMMRC.
NE Working Group members
The group comprises clinicians involved in the provision of perinatal care and representatives from associated areas. The current members are:
- Dr Jutta van den Boom (Chair), neonatal paediatrician, Te Whatu Ora – Health New Zealand Waitematā
- Dr Kitty Bach, neonatal paediatrician, Te Whatu Ora – Health New Zealand Te Toka Tumai Auckland
- Dr David Bailey, obstetrician and gynaecologist, Te Whatu Ora – Health New Zealand Te Tai Tokerau
- Dr Malcolm Battin, neonatal paediatrician, Te Whatu Ora – Health New Zealand Te Toka Tumai Auckland
- Ms Karen Bennington, neonatal nurse practitioner, Te Whatu Ora – Health New Zealand Capital, Coast and Hutt Valley
- Dr Robin Cronin, midwife, Te Whatu Ora – Health New Zealand Counties Manukau
- Ms Julie Richards, midwifery educator, Te Whatu Ora – Health New Zealand Nelson Marlborough
- Mr John Tait, PMMRC Chair
The group is supported by the PMMRC national coordinator, email: PMMRCnationalcoordinator@hqsc.govt.nz
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)
Related Resources
Related Pages
Information compiled by the NE Working Group and updated February 2023
Last updated: 8th February, 2023
