NMH

NMH | 2024 55 Neonatology neurodevelopmental follow-up of infants born preterm has included all infants born <1500g and/or <29+6 weeks (both inborn and outborn). It now spans 25 years from birth dates between 1997- 2022. Our follow-up of term infants diagnosed with neonatal encephalopathy (NE) at birth is in its 15th year. The Bayley Scales (BSID ll and Bayley-lll) being the most widely used standardised tools for the assessment of neurodevelopment in early childhood have been our key and preferred measurement of developmental outcome in these cohorts being in-person assessments. The revised Bayley 4 Scales will now be used for our 2023 cohort. The PARCA-R – a parent report questionnaire was used for the families who did not wish to travel to Dublin for a Bayley Assessment (due to distance to travel / being happy with their child's development to date). Seven families completed the PARCA-R. The PARCA-R accepts that parents are good judges of their child's current abilities. It assesses cognitive and language development from 23.5 – 27.5 months of age. Unfortunately, the PARCA-R does not have a motor scale. Hence, motor follow-up was by discussion with the child's parents similar to the Ages and Stages Questionnaire. The face-to-face assessment using the Bayley Scales is the preferred option for assessment. Much can be learned by watching while assessing. How the children perform and handle the assessment provides additional valuable information. In 2022 the NWIHP (National Women and Infants Health Programme) formed the National Neonatal Psychology Forum to support the national roll out of the Bayley assessment. The first aim of this forum was to ensure a Bayley assessment for all preterm (< 1500g /<29 wks) and NE infants at two years of age (corrected age for preterms) and to collate this data using REDCap* to facilitate ongoing national data collection for future planning of services. Neurodevelopmental follow-up of high- risk infants is important in early detection and in the provision of early intervention for those with potential impairments. In relation to cerebral palsy, preterm infants account for 50% of cases, HIE infants account for 15% of cases, and infants with congenital malformations (especially cardiac) account for 20% of cases. The second aim was to accommodate the Bayley assessment in the infant's catchment area to minimise disruption and travel for infants and their families. Three additional psychologist posts were created in Cork, Limerick and Galway. However, more psychology posts are needed to support Level 2 NICUs to provide assessments for their own patients and for the local Level 1 hospitals in their RHA. Infants born preterm are assessed at two years' corrected age. Term infants who presented with Neonatal Encephalopathy / seizures are assessed at two years' chronological age. An assessment at two years of age (2 years' corrected age for preterm infants) is the optimum time to measure cognitive, language and motor outcome when following up these cohorts. Preterm Group In the NMH preterm cohort who presented for assessment, 26 children (29.2%) were from the Dublin area, and 10 children (11.2%) from the Wicklow area. The remaining 53 children (60%) lived outside the Dublin area for example, Donegal (10 children) 11.2%, Mayo/Galway (4 children) 4.5%, South Midlands (8 children) 9%, Midlands (19 children) 21.3%, Northeast (8 children) 9%. Three children were from Northern Ireland. A total of 89 NMH preterm infants born <1500g and/or <29 weeks, gestation,11 NMH term infants with Neonatal Encephalopathy, 3 babies with neonatal seizures and 1 NAS baby were listed for follow-up in 2024 in NMH. One NE baby was followed up in Limerick. This baby's outcomes have been included in this report. Of these 89 preterm infants, 72 (81%) had a Bayley assessment. Seven families (8%) completed a PARCA-R Questionnaire meaning a total of 79 (89%) infants had a formal follow-up. One family declined the assessment as their child was linked in to early services with some medical and physical issues mentioned. Three families were living outside Ireland. Of the 3, one child was reported as doing extremely well. Two families could not be located. Two families did not attend despite several attempts to encourage them to attend. Both children were presenting with significant sensory dysregulation. Two assessment outcomes are still pending with normal outcome expected for one baby. The other baby had a confirmed mild CP diagnosis. This baby is doing well with near normal development apart from some gross motor issues. These children were assessed locally by their early intervention therapist. Table 1 outlines the outcome of our preterm population represented across each gestational age category who were assessed using the Bayley Scales and the PARCA - R Questionnaire. Looking at the Bayley data first, these preterm children did well overall (80.6%) showing good outcome in terms of their Cognitive Development, 4% less than last year. In terms of advanced performance 9.7% performed within the Superior /Superior Range and 22.2% performed within the High Average Range. 48.6% performed within the Average Range, with 8.3% performing within the Low Average Range. There was some Cognitive Delay in that 2.8% showed Moderate Delay (Borderline Range) and 8.3% showed Extreme Delay (2% less than last year). Language outcomes indicated a 4% improvement in terms of extreme delay indicating 13.9% compared with 18.3% in 2023. 9.7% showed Moderate

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