Neonatal Follow-up Research Articles

An overview of the Swiss Neonatal Network & Follow-up Group (SwissNeoNet)

: The Swiss Neonatal Network & Follow-up Group (SwissNeoNet) started as a paper based standardized data collection for very preterm born infants in 1995 for the purpose of research. It has since evolved into a sophisticated online medical registry with the chief aim of improving the quality of medical care for high-risk newborn infants through research, education and collaborative audit. In support of its aim, it collects primary hospitalization and neurodevelopmental follow-up data of various cohorts of newborns from all level III neonatal intensive care units (NICUs) and all peripheral intermediate care level IIB neonatal units (NUs) in Switzerland. It coordinates clinical, epidemiological and health-services research that provide orientation for Swiss neonatologists on how their performance compares with that of other networks, how different approaches in practices without clear evidence base associate with outcome, or how processes and outcomes evolve longitudinally. Its research also allowed former very preterm born children to express their own perception of their quality of life. SwissNeoNet closely monitors and compares NICUs and NUs and provides the infrastructure for quality improvement collaboratives. All units jointly and openly compare their performance and identify potential for changing clinical practices which has led to several local improvement projects as well as revisions of national treatment recommendations. To collaborate in research, to acquire benchmarks, and to serve as a benchmark, SwissNeoNet is actively engaged in several national and international collaborations. Receiving no governmental support, SwissNeoNet struggles with a limited budget to continuously operate a multifaceted, complex network with an electronically advanced, security sensitive infrastructure. Nevertheless, it plans expanding by connecting closer to the families and ultimately the former very preterm born children in the near future: building a patient reported outcome measure (PROM) repository and thus learning more about the parental/patient perspective will benefit clinical research, qualitative research, quality assessment, long-term follow-up recruitment and may even pave the way to later expand into citizen science and personalized health care.

Discharge Practices for Infants with Bronchopulmonary Dysplasia: A Survey of National Experts.

To establish consensus practices among a panel of national experts for the discharge of premature infants with bronchopulmonary dysplasia (BPD) from the hospital to home. We conducted a Delphi study that included US neonatologists and pediatric pulmonologists from the Bronchopulmonary Dysplasia Collaborative to establish consensus practices-defined as recommendations with at least 80% agreement-for infants with BPD being discharged from the hospital. Specifically, we evaluated recommendations for diagnostic tests to be completed around discharge, follow-up respiratory care, and family education. Thirty-one expert participants completed 3 rounds of surveys, with a 99% response rate (92 of 93). Consensus was established that infants with moderate-severe BPD (ie, those who remain on respiratory support at 36weeks) and those discharged on oxygen should be targeted for in-person pulmonary follow-up within 1month of hospital discharge. Specialized neonatal follow-up is an alternative for infants with mild BPD. Infants with moderate or severe BPD should have an echocardiogram performed after 36weeks to screen for pulmonary hypertension. Infants with BPD warrant additional evaluations if they have growth restriction or poor growth, pulmonary hypertension, or tachypnea and if they are discharged to home on oxygen, diuretics, or nonoral feeds. This Delphi survey establishes expert consensus around best practices for follow-up respiratory management and routine evaluation for infants with BPD surrounding neonatal discharge. Areas of disagreement for which consensus was not established are discussed.

Antenatal risk factors for retinopathy of premature

This literature review presents the antenatal risk factors for the development of retinopathy of prematurity (ROP). Despite advances in antenatal and neonatal therapeutic interventions, screening, and follow-up, ROP remains a potentially vision-threatening retinopathy that requires careful monitoring and timely intervention to prevent the progression of adverse visual impairment or blindness. ROP is a multifactorial disease. The main risk factors are low gestational age and low birth weight. Recent experimental and clinical data support the hypothesis that multiple antenatal factors are involved in the etiology and progression of ROP. These factors include the age of the mother, maternal diseases, pregnancy-associated maternal pathologies, use of drugs to correct these conditions, and inflammatory process. Their roles are ambiguous and often contradictory. The physiology of the mother and placenta can significantly influence the risk of ROP development in preterm infants. The placenta connects the mothers body and the fetus, and it functions in the exchange of nutrients and oxygen between the mother and the fetus. Therefore, any pathological changes in the mothers body entail changes in the placenta, which this directly affects the fetus. A sudden loss of placental support is detrimental to the development of infants in the immediate postnatal period. Thus, these factors should be taken into account when assessing the risk of ROP development to predict and prevent poor vision in children.

Impact of COVID-19 on Infants followed after Discharge from the Neonatal Intensive Care Unit Using a Telemedicine Model.

Coronavirus disease 2019 (COVID-19) continues to have a profound impact on infant health care and health outcomes. In this study, we aimed to characterize the social impact of the first COVID-19 lockdown on families in a neonatal follow-up program (NFP). Given the ongoing increased use of telehealth across the medicine, we also evaluated for patient-level differences in virtual visit rates to identify patients at risk of follow-up challenges. To assess the impact of virtual health care utilization, we conducted a retrospective cohort study to describe challenges associated with telemedicine use in this vulnerable patient population during our telemedicine epoch (March 13, 2020-July 31, 2020). We also looked for patient-level factors associated with attending NFP visits as scheduled. Finally, we summarized caregiver responses to a COVID-19 Obstacles Assessment Survey and assessed for racial disparities in these responses. When comparing patients who completed their virtual visit to those who did not, we found no differences by infants' sex, birth weight, gestational age at birth, or caregiver self-reported race and ethnicity. However, infants whose visits did not occur were more often discharged with equipment or covered by public insurance. Nine percent of families reported food insecurity. During the initial COVID-19 lockdown, families with infants discharged from a neonatal intensive care unit (NICU) faced significant obstacles caring for their infants and attending scheduled follow-up visits. Infants in families with lower socioeconomic status or with increased medical complexity faced increased challenges in attending virtual follow-up visits during this epoch. Given the ongoing reliance on telemedicine in health care and the need to better prepare for future epidemics/pandemics, this study offers critical information that can assist neonatal teams in bolstering transitions to home and creating stronger safety nets for their patients after discharge. · Telemedicine works well for high-risk neonatal populations.. · Infant medical complexity may be a risk factor for challenges attending neonatal follow-up visits.. · NICUs should work to prevent food insecurity postdischarge..

Lung Ultrasound Role in Diagnosis of Neonatal Respiratory Disorders: A Prospective Cross-Sectional Study.

Lung ultrasound (LUS) has become one of the most exciting applications in neonatal point-of-care ultrasound (POCUS), yet still lacks routine clinical use. This study assesses the utility of LUS for neonatal respiratory disorders (NRDs) diagnosis and follow-up compared to chest X-ray (CXR). A prospective cross-sectional study was conducted on 100 neonates having NRDs with a gestational age ≥28 weeks, excluding those having multiple congenital anomalies, chromosomal aberrations, hydrops fetalis and/or heart failure. CXR and LUS were done on admission for diagnosis and were repeated after 7 days, or if needed earlier within the 7 days. The diagnosis of NRDs by CXR and LUS on admission and after 7 days was comparable (p > 0.05). LUS diagnosis sensitivity and specificity for respiratory distress syndrome, pneumonia, meconium aspiration syndrome, pneumothorax and pulmonary atelectasis were 94.7/100%, 97.5/95%, 92.3/100%, 90.9/98.9% and 100/97.8%, respectively. The total agreement between LUS and CXR was 98.5% with 95% CI (0.88 to 0.92). LUS and CXR had considerable agreement in the diagnosis of NRDs. Being a reliable bedside modality of diagnosis and safer than CXR, LUS may be considered an alternative method for the diagnosis of neonates with NRDs.

Furthering high-quality neonatal follow-up programs: current issues and challenge

随着高危新生儿的救治成功率显著提升，高危新生儿的生存质量问题成为临床关键问题。整合围生期-新生儿期-出院随访的高危新生儿一体化管理模式已成为新生儿医学发展的重要方向。高危新生儿的高质量一体化随访体系仍有待建设，本文将其面临的问题和需要改变的内容进行论述。.

Coronavirus Infection in Neonates: Neurodevelopmental Outcomes at 18 Months of Age.

Although most neonates with severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) infection experience only mild disease, its impact on neurodevelopmental outcomes is unknown. This study aimed to assess the 18-month neurodevelopmental outcomes of infants who had SARS-CoV-2 infection as neonates. The authors conducted a prospective cohort study of neonates diagnosed with SARS-CoV-2 infection from June 2020 to December 2020 through nasopharyngeal coronavirus disease 2019 (COVID-19). A total of 58 neonates were identified from the Kuwait National COVID-19 Registry and enrolled. Historical controls were selected from the neonatal follow-up registry and matched in a 2 : 1 ratio based on sex and gestational age. When the subjects were 18 months of age, their neurodevelopmental outcomes were assessed by two trained assessors using the Bayley Scales of Infant and Toddler Development-3rd Edition (BSID-III). Forty children diagnosed with SARS-CoV-2 infection were included in the final analysis. The median age at infection was 18 days (range: 10-26 days). Eighteen (45%) patients were asymptomatic, 15 (37.5%) had a sepsis-like presentation, 5 (12.5%) exhibited respiratory distress, and 2 (5%) had a multisystem inflammatory syndrome in children (MIS-C)-like presentation. At the 18 months follow-up, only one child showed a severe developmental delay and one child had a language delay. BSID-III outcomes did not differ significantly between the SARS-CoV-2-infected and control groups. There was no difference in neurodevelopmental outcomes at 18 months in children infected with SARS-CoV-2 compared with controls, although longer neurodevelopmental follow-up studies are required.

COVID-19 pandemic and lockdown: impact on parents' stress level and infant care in a tertiary neonatal unit.

Neonatal intensive care unit (NICU) admission increases parents' stress levels and it might be even higher in the crisis of coronavirus disease 2019 (COVID-19) pandemic and lockdown. This study was done to identify the stress levels of parents of admitted neonates and the difficulties encountered in neonatal care and follow-up during the COVID-19 pandemic and lockdown. The Parental Stressor Scale (PSS:NICU) and Perceived Stress Scale (PeSS) were used to identify the stress levels of parents of admitted neonates. Online survey form with a structured questionnaire comprising PeSS and NICU:PSS was sent through messaging app (Google form) after informed consent. PSS score of <14 was considered low stress, 14-26 moderate and >26 as high. A total of 118 parental responses (mother /father in 26, both in 46) for 72 admitted neonates, were obtained. The mean (SD) PeSS score was 19.7 (5.8%) and 92 (78%) had moderate stress while 11 (9%) had high stress. In NICU:PSS, sights-sounds and parental role had more median scores: 2.25 (1-3.75) and 2.21 (1-3.57), respectively. Maternal and paternal NICU:PSS (p-0.67) and PeSS (p-0.056) scores were not statistically different. Keeping nil per oral, invasive ventilation, culture-positive sepsis, fathers' transport difficulty and longer duration of mothers' and neonates' hospital stay was associated with increased NICU: PSS scores. Twenty (29%) parents could not bring their child for follow-up and there was a delay in immunisation in 21 (30%). The pandemic and the lockdown might have disrupted antenatal and postnatal follow-ups further adding to the parental stress.

Does maternal stature modify the association between infants who are small or large for gestational age and adverse perinatal outcomes? A retrospective cohort study.

To investigate the effect of maternal stature on adverse birth outcomes and quantify perinatal risks associated with small- and large-for-gestational age infants (SGA and LGA, respectively) born to mothers of short, average, and tall stature. Retrospective cohort study. USA, 2016-2017. Women with a singleton live birth (N= 7325 741). Using data from the National Center for Health Statistics, short and tall stature were defined as <10th and >90th centile of the maternal height distribution. Modified Poisson regression was used to estimate adjusted risk ratios (aRRs) and 95% confidence intervals (95%CIs). Preterm birth (<37 weeks of gestation), neonatal intensive care unit (NICU) admission and severe neonatal morbidity/mortality (SNMM). With increased maternal height, the risk of adverse outcomes increased in SGA infants and decreased in LGA infants compared with infants appropriate-for-gestational age (AGA) (p <0.001). Infants who were SGA born to women of tall stature had the highest risk of NICU admission (aRR1.98, 95%CI 1.91-2.05; p <0.001), whereas LGA infants born to women of tall stature had the lowest risk (aRR0.85, 95%CI 0.82-0.88; p< 0.001), compared with AGA infants born to women of average stature. LGA infants born to women of short stature had an increased risk of NICU admission and SNMM, compared with AGA infants born to women of average stature (aRR1.32, 95%CI 1.27-1.38; aRR1.21, 95%CI 1.13-1.29, respectively). Maternal height modifies the association between SGA and LGA status at birth and neonatal outcomes. This quantification of risk can assist healthcare providers in monitoring fetal growth, and optimising neonatal care and follow-up.

Association of Postnatal Growth Changes and Neurodevelopmental Outcomes in Preterm Neonates of

To examine associations between weight and head circumference (HC) changes and neurodevelopment in preterm infants. This retrospective cohort study of Canadian Neonatal Network and Canadian Neonatal Follow-Up Network sites included preterm infants born 2010-2018. Logistic regression and model diagnostics evaluated relationships between changes in z score and velocity of weight and HC from birth to discharge from a tertiary neonatal intensive care unit, discharge to 18-24months corrected age (CA), and birth to 18-24months CA and significant cognitive/motor impairment at 18-24months CA classified using a Bayley Scales of Infant and Toddler Development-Third Edition cognitive or motor composite score <70. In total, 4530 infants (53.0% male) with a mean (SD) gestational age of 26.3 (1.4) weeks and birth weight of 920 (227) g were included. Weight and HC changes were associated with lower odds of significant cognitive/motor impairment including an OR of 0.87 (95% CI: 0.83, 0.91; P< .001) for a 1-g/d increase in weight from discharge to 18-24months CA and 0.81 (95% CI: 0.75, 0.88; P< .001) for a 1-unit increase in HC z score from birth to 18-24months CA. Associations were not statistically significant in morbidity-free neonates. Weight and HC gains poorly discriminated between infants with and without significant cognitive/motor impairment (areas under the receiver operating characteristic curve of <0.64). No growth measure had a clinically useful balance of sensitivity and specificity. Weight and HC changes were associated with significant cognitive/motor impairment but had poor discriminatory capability. Neonatal morbidities may make a larger contribution than postnatal growth to neurodevelopment.

Guilt and Regret Experienced by Parents of Children Born Extremely Preterm

To explore decisional regret of parents of babies born extremely preterm and analyze neonatal, pediatric, and parental factors associated with regret. Parents of infants born <29weeks of gestational age, aged between 18months and 7years, attending neonatal follow-up were enrolled. Hospital records were reviewed to examine morbidities and conversations with parents about levels of care. Parents were asked the following question: "Knowing what you know now, is there anything you would have done differently?" Mixed methods were used to analyze responses. In total, 248 parents (98% participation) answered, and 54% reported they did not have regret. Of those who reported regret (n=113), 3 themes were most frequently invoked: 35% experienced guilt, thinking they were responsible for the preterm birth; 28% experienced regret about self-care decisions; and 20% regretted decisions related to their parental role, generally wishing they knew sooner how to get involved. None reported regret about life-and-death decisions made at birth or in the neonatal intensive care unit. Impairment at follow-up, gestational age, and decisions about levels/reorientation of care were not associated with regret. More mothers reported feeling guilt about the preterm birth (compared with fathers); parents of children with severe lesions on ultrasonography of the head were less likely to report regret. Approximately one-half of the parents of infants born extremely preterm had regrets regarding theirneonatal intensive care unit stay. Causes of regret and guilt should be addressed and minimized.

Grouping of Ankyloglossia According to Coryllos Anatomical Classification and Follow-Up Results for Breastfeeding: Single-Center, Cross-Sectional Study.

Ankyloglossia is a condition of limited tongue mobility caused by a short lingual frenulum. The diagnosis and treatment of ankyloglossia are still controversial. The main clinical problems encountered during breastfeeding are difficulty in sucking and its clinical reflections. This study aims to evaluate the infant population born with ankyloglossia and to determine the results of frenotomy. We conducted an observational, cross-sectional study among infants born in a tertiary hospital. We included all infants born between 1 January and 30 June 2022. The neonatal follow-up protocol for ankyloglossia was determined before the defined dates, and data were recorded during the screening period. The recorded data were retrospectively collected from the files. Within six months, 705 infants were born. Due to additional problems and other conditions that prevent breastfeeding, evaluable data of 207 (29.3%) infants could not be provided. Of the remaining 498 infants, 234 (33.2%) had ankyloglossia. While none of the infants without ankyloglossia had a breastfeeding problem after appropriate training, 28.6% of the ankyloglossia group had a breastfeeding problem (p &lt; 0.001). The need for frenotomy differed significantly between Coryllos groups (p &lt; 0.001). Breastfeeding was unsuccessful before frenotomy in 12 Coryllos type-1 patients, and all had difficulty in sucking. Frenotomy was performed within the three-month follow-up period in all patients with complaints of inability to firmly grasp the breast, nipple slipping from the mouth, and nipple biting during the first 24 h. In terms of breastfeeding problems, regardless of the anatomical typology, frenotomy can be performed safely in early life with successful results. If deficiencies or difficulties in breastfeeding are noticed in ankyloglossia patients even at the first control, frenotomy should be recommended in clinical conditions.

Timing of Systemic Steroids and Neurodevelopmental Outcomes in Infants < 29 Weeks Gestation

Objective: To determine the association between postnatal age (PNA) at first administration of systemic postnatal steroids (sPNS) for bronchopulmonary dysplasia (BPD) and mortality or significant neurodevelopmental impairment (sNDI) at 18−24 months corrected age (CA) in infants < 29 weeks’ gestation. Methods: Data from the Canadian Neonatal Network and Canadian Neonatal Follow-up Network databases were used to conduct this retrospective cohort study. Infants exposed to sPNS for BPD after the 1st week of age were included and categorized into 8 groups based on the postnatal week of the exposure. The primary outcome was a composite of mortality or sNDI. A multivariable logistic regression model adjusting for potential confounders was used to determine the association between the sPNS and ND outcomes. Results: Of the 10,448 eligible infants, follow-up data were available for 6200 (59.3%) infants. The proportion of infants at first sPNS administration was: 8%, 17.5%, 23.1%, 18.7%, 12.6%, 8.3%, 5.8%, and 6% in the 2nd, 3rd, 4th, 5th, 6th, 7th, 8−9th, and ≥10th week of PNA respectively. No significant association between the timing of sPNS administration and the composite outcome of mortality or sNDI was observed. The odds of sNDI and Bayley-III motor composite < 70 increased by 1.5% (95% CI 0.4, 2.9%) and 2.6% (95% CI 0.9, 4.4%), respectively, with each one-week delay in the age of initiation of sPNS. Conclusions: No significant association was observed between the composite outcome of mortality or sNDI and PNA of sPNS. Among survivors, each week’s delay in initiation of sPNS may increase the odds of sNDI and motor delay.

Torn between two worlds: parental experiences of neonatal follow-up for infants with hypoxic ischaemic encephalopathy in India–a qualitative study using interpretative phenomenological analysis

ObjectiveThis study aimed to understand the barriers and facilitators of a neonatal follow-up programme, as perceived by parents of infants born with hypoxic ischaemic encephalopathy (HIE).DesignThis study applied a qualitative...

27 Neurodevelopmental Outcomes of Preterm Infants Born &amp;lt;29 weeks with Bronchopulmonary Dysplasia Associated Pulmonary Hypertension: A Multicenter Study

Abstract Background More than 1 in 4 preterm infants with bronchopulmonary dysplasia (BPD) develop BPD-associated pulmonary hypertension (BPD-PH) that is associated with significant morbidity. Data regarding neurodevelopmental outcomes with BPD-PH in preterm infants are lacking. Objectives To determine neurodevelopmental outcomes of preterm infants born &amp;lt; 29 weeks gestational age (GA) with BPD associated pulmonary hypertension at 18 to 24 months corrected gestational age (CGA). Design/Methods In this retrospective cohort study, preterm infants born &amp;lt; 29 weeks GA between January 2016 and December 2019 at level 3 Neonatal Intensive Care Units at Foothills Hospital in Calgary and the University of Texas Medical Branch (UTMB) in Galveston, who were evaluated at 18-24 months CGA in the neonatal follow-up clinics were included. We compared demographic factors, neurodevelopmental status including Bayley-III scores and sensory impairments between the two groups based on the presence of PH at 36 weeks CGA: Group I: BPD with PH and Group II: BPD without PH, using univariate and multivariable regression models. The primary outcome was a composite of death or neurodevelopmental impairments (NDI). NDI was defined as any cerebral palsy (GMFCS≥1), Bayley-III score &amp;lt; 85 on one or more of the cognitive, motor, or language composite scores, sensorineural or mixed hearing impairment or unilateral or bilateral visual impairment. Results Of 372 eligible infants, 118 (Group I [BPD-PH] =7, Group II [BPD with no PH] =111) were lost to follow up. Of the remaining 254 infants, 52 in Group I and 202 in Group II were followed at 18-24 months CGA. Group I and Group II had median (IQR) birth weight of 710g (323) and 815g (314) [p=0.004] and median gestational ages (IQR) were 25 weeks (2) and 26 weeks (2) [p=0.020], respectively . Rates of associated impairments are shown in Figure 1. Infants in BPD-PH group (Group I) were more likely to have mortality or NDI (adjusted Odds Ratio [aOR] 3.82; 95% CI: 1.17-12.41) (Table 1). Conclusion BPD-PH in preterm infants born &amp;lt; 29 weeks GA is associated with increased odds of the composite outcome of death or neurodevelopmental impairment and language delay at 18-24 months CGA.

Association of Neonatal Pain-Related Stress and Parent Interaction With Internalizing Behaviors Across 1.5, 3.0, 4.5, and 8.0 Years in Children Born Very Preterm

Internalizing (anxiety and/or depressive) behaviors are prevalent in children born very preterm (24-32 weeks' gestation). Procedural pain-related stress in the neonatal intensive care unit (NICU) is associated with long-term internalizing problems in this population; however, whether positive parenting during toddlerhood attenuates development of internalizing behaviors across childhood is unknown. To investigate whether neonatal pain-related stress is associated with trajectories of internalizing behaviors across 1.5, 3.0, 4.5, and 8.0 years, and whether supportive parenting behaviors and lower parenting stress at 1.5 and 3.0 years attenuate this association. In this prospective longitudinal cohort study, preterm neonates (born at 24-32 weeks' gestation) were recruited from August 16, 2006, to September 9, 2013, with follow-up visits at ages 1.5, 3.0, 4.5, and 8.0 years. The study was conducted at BC Women's Hospital, Vancouver, Canada, with recruitment from a level III neonatal intensive care unit and sequential developmental assessments performed in a Neonatal Follow-up Program. Data analysis was performed from August to December 2021. Parental report of child internalizing behaviors on the Child Behavior Checklist at 1.5, 3.0, 4.5, and 8.0 years. A total of 234 neonates were recruited, and 186 children (101 boys [54%]) were included in the current study across ages 1.5 (159 children), 3.0 (169 children), 4.5 (162 children), and 8.0 (153 children) years. After accounting for clinical factors associated with prematurity, greater neonatal pain-related stress was associated with more internalizing behaviors across ages (B = 4.95; 95% CI, 0.76 to 9.14). Higher parenting stress at age 1.5 years (B = 0.17; 95% CI, 0.11 to 0.23) and a less supportive parent environment (less sensitivity, structure, nonintrusiveness, nonhostility, and higher parenting stress; B = -5.47; 95% CI, -9.44 to -1.51) at 3.0 years were associated with greater internalizing problems across development to age 8.0 years. In this cohort study of children born very preterm, exposure to repetitive neonatal pain-related stress was associated with persistent internalizing behavior problems across toddlerhood to age 8.0 years. Supportive parenting behaviors during early childhood were associated with better long-term behavioral outcomes, whereas elevated parenting stress was associated with more child anxiety and/or depressive behaviors in this population. These findings reinforce the need to prevent pain in preterm neonates and inform future development of targeted parent-led behavioral interventions.

44 Prevalence estimates of Cerebral Palsy among 4-year-old children living Manitoba, Births: 2013-2015

Abstract Background Cerebral palsy (CP) is the most common physical disability in children with an estimated prevalence of 2.1 per 1000 live births. Understanding the provincial prevalence of CP and describing clinical sub-types within Manitoba assists with planning future funding and ensuring adequate resources. Objectives This study aimed to determine the prevalence estimate of CP among 4-year-old children in Manitoba, and further describe children’s clinical presentation. Design/Methods As the Rehabilitation Centre for Children (RCC) is a referral site for all Manitoba children requiring multidisciplinary evaluation/treatment for CP, this retrospective study used RCC’s electronic medical records to identify all 4-year-old children who had a confirmed CP diagnosis, were living in Manitoba and were born between Jan 2013 to Dec 2015. To ensure provincial data was complete, information was cross-referenced with the Pediatric Neurology Clinic’s medical records and the Neonatal Follow-up database. Prevalence rate was determined using Government of Manitoba denominators of same age children. The Gross Motor Function Classification system (GMFCS) determined the child’s level of functioning Results The prevalence of CP in Manitoba (birth years 2013-2015) for 108 4-year-old-children is 2.05 (95% CI1.7, 2.5) per 1000 4-year-old children. Of the 108 4-year-old children with CP, 6 (5.6%) had a post neonatal cause, while 102 (94.4%) had a perinatal cause; and 51/108 (47%) were born preterm. Motor subtypes for 108 children are: Spastic 99 (91.7%) including hemiplegia 41.4%, diplegia 21.2%, triplegia 8.1%, and quadriplegia 29.3%; Dyskinetic 4 (3.7%); Ataxic 3(2.8%) and Hypotonic 2 (1.8%). 58/108 (54%) were independent ambulators (GMFCS level II/II). Conclusion Our provincial rate of CP is consistent with the prevalence reported in developed countries. Understanding the clinical presentation assists in informing treatment and resources for children with CP in our province.

15 Ranking and rating severity: stakeholder perspectives of neurodevelopmental impairment after preterm birth

Abstract Background Children born very preterm are at increased risk of neurodevelopmental impairment (NDI). NDI rates are used to make critical healthcare decisions. The Canadian Neonatal Follow-Up Network (CNFUN) defines severe NDI at age 18–24 months as Bayley-III Cognitive, Motor or Language composite scores &amp;lt;70, need for hearing aids or cochlear implants, bilateral visual impairment or non-ambulatory cerebral palsy (Gross Motor Classification System level 3 or higher). This definition was developed using the perspectives of clinicians and scientists. Stakeholders including parents/caregivers, persons born preterm and community partners have never been asked how they categorize disabilities and rank different impairments. Objectives To evaluate stakeholder perspective of severity of disability and ranking of different health conditions all defined as severe by CNFUN using clinical vignettes. Design/Methods Ten clinical vignettes describing 18 month old children with combinations of single and multiple impairments based on the CNFUN definition of severe NDI and one clinical vignette describing a child without NDI (control) were co-developed by clinicians and parents. The survey of 11 vignettes was distributed to: (1) British Columbian parents of very preterm children during follow-up clinic visits; and (2) Canadian and international parents, families, individuals with lived experience with prematurity and/or NDI and their social networks using a snowball sampling technique. Participants rated the severity of each vignette on a scale from 0 (worst possible health) to 10 (best possible health) and answered if they perceived the vignette to represent a severe disability. Results were analyzed descriptively and mean differences from the control were compared using a linear mixed effects model. Results 827 participants and 4553 vignettes were completed with no significant difference by population sampled. Participants classified the clinical vignettes as describing a severe condition ranging from 5% for the cognitive delay vignette to 55% for the cerebral palsy and language delay vignette. Mean difference in rank compared to control is shown in Figure 1. Only the ranking of the latter vignette was significantly different from the control. Conclusion Most key stakeholders do not perceive clinical vignettes describing CNFUN definitions of severe NDI as truly severe. Components of severe NDI rank differently but only the cerebral palsy and language delay vignette varies significantly. Current CNFUN definitions of severe NDI need to be revised.

29 Maternal overweight and obesity’s impact on long-term neurodevelopmental outcomes in premature infants (&amp;lt;29 weeks) at 18-24 months corrected age

Abstract Background Increasing rates of obesity are of growing concern to maternal and child health as mothers with obesity are at risk of pregnancy complications. Infants of mothers with overweight/obese pre-pregnancy body mass index (BMI) may also be at risk of significant neurodevelopmental disorders. The relationship between maternal pre-pregnancy BMI and neurodevelopmental outcomes in preterm infants is not yet clearly defined. Objectives To determine the association of pre-pregnancy BMI of mothers of infants born &amp;lt;29 weeks gestational age (GA) and neurodevelopmental impairment (NDI) at 18-24 months corrected age (CA). Design/Methods Preterm infants born &amp;lt;29 weeks GA between January 2005 and December 2015 evaluated in the neonatal follow-up clinic at 18-24 months CA were included. Demographic characteristics as well as neurodevelopmental status including Bayley-III cognitive, language, and motor scores and sensory impairments were compared between three groups based on maternal pre-pregnancy BMI (BMI1 [18.5-24.9 kg/m2] vs. BMI2 [25-29.9 kg/m2] vs. BMI3 [≥30 kg/m2]) using univariate and multivariable regression models. The primary outcome was a composite of death or NDI. NDI was defined as the presence of Bayley-III &amp;lt;85 on one or more of the cognitive, motor, or language composite scores, any cerebral palsy (GMFCS ≥1), sensorineural or mixed hearing impairment, or unilateral or bilateral visual impairment. Results Of 771 eligible infants, 53 not seen in the follow-up clinic and 21 born to mothers with BMI &amp;lt;18.5 kg/m2 were excluded. Of the remaining 697 participants, 315 (45%) infants were in BMI1, 235 (34%) in BMI2, and 147 (21%) in BMI3 groups. Infants in BMI1, BMI2, and BMI3 groups had mean (SD) birth weight of 897 (231), 854 (208), and 867 (234) grams and median GA (IQR) of 27 (3), 26 (2), and 27 (3) weeks respectively. Rates of associated impairments are shown in Figure 1. The odds of a composite of death or NDI in BMI2 vs. BMI1 and BMI3 vs BMI1 groups were 1.33 (95%CI 0.86-2.06) and 0.76 (95%CI 0.47-1.22) respectively (Table 1). Infants born to mothers in the BMI2 group had twice the odds of scoring &amp;lt;85 on the Bayley-III language composite than those in BMI1 (adjusted odds ratio 2.06 [95% CI; 1.28-3.32]). Conclusion Pre-pregnancy body mass index was not associated with death or neurodevelopmental impairment in very preterm infants at 18-24 months corrected age. However, infants born to mothers who were overweight were more likely to have lower language scores.

Effect of Fetoscopic Laser Photocoagulation on Fetal Growth and Placental Perfusion in Twin-Twin Transfusion Syndrome.

Objective: To investigate the fetal growth pattern after fetoscopic laser photocoagulation (FLP) in twin-twin transfusion syndrome (TTTS) and the effect of FLP on placental perfusion and intrauterine growth restriction (IUGR) incidence. Methods: TTTS cases with a live delivery of both twins at least 28 days after FLP and with a neonatal follow-up at our hospital at least 60 days after delivery were included. The biometric data obtained before FLP (based on ultrasound); time point M1), upon birth (M2), and at neonatal follow-up (M3) were analyzed. The body weight discordance (BWD) was defined as (estimated fetal weight [body weight] of the recipient twin − estimated fetal weight [body weight] of the donor twin)/(estimated fetal weight [body weight] of the recipient twin) × 100%. Total weight percentile (TWP) was defined as the donor + recipient twin weight percentile; the TWP indirectly reflected the total placental perfusion. Results: the BWDs decreased from M1 to M2 to M3 (24.6, 15.9, and 5.1, respectively, p < 0.001, repeated measurements). The weight percentiles of recipient twins decreased after FLP, that is, from M1 to M2 (53.4% vs. 33.6%, respectively, p < 0.001, least significant difference [LSD] test). However, the weight percentiles of donor twins increased after delivery, that is, from M2 to M3 (13.2% vs. 26.2%, respectively, p < 0.001, LSD test). Moreover, the TWPs decreased after FLP, that is, from M1 to M2 (66.2% vs. 46.8%, respectively, p = 0.002, LSD test) and increased after delivery, that is, from M2 to M3 (46.8% vs. 63.2%, respectively, p = 0.024, LSD test). The IUGR incidences in donor twins were significantly lower after FLP (77.4% vs. 56.6%, respectively, p = 0.019, McNemar test) and further decreased after delivery (56.6% vs. 37.7%, respectively, p = 0.041, McNemar Test); however, no significant difference was observed in recipient twins’ IUGR incidences among M1, M2, and M3. The donor twin had catch- up growth in body weight, height, and head circumference after delivery, and the recipient twin had catch-up growth in only body height after delivery. Conclusions: the BWD decreased after FLP in fetuses with TTTS mainly because of the decreased weight percentiles of recipient twins. Moreover, it further decreased after delivery mainly because of the increased weight percentiles of donor twins. FLP not only decreased placental perfusion but also improved the TTTS prognosis because of reduced BWD and donor twin IUGR incidence.