Pilot feasibility study of a digital technology approach to the systematic electronic capture of parent-reported data on cognitive and language development in children aged 2 years.

BACKGROUND: The assessment of language and cognition in children at risk of impaired neurodevelopment following neonatal care is a UK standard of care but there is no national, systematic approach for obtaining these data. To overcome these challenges, we developed and evaluated a digital version of a validated parent questionnaire to assess cognitive and language development at age 2 years, the Parent Report of Children's Abilities-Revised (PARCA-R). METHODS: We involved clinicians and parents of babies born very preterm who received care in north-west London neonatal units. We developed a digital version of the PARCA-R questionnaire using standard software. Following informed consent, parents received automated notifications and an invitation to complete the questionnaire on a mobile phone, tablet or computer when their child approached the appropriate age window. Parents could save and print a copy of the results. We evaluated ease of use, parent acceptability, consent for data sharing through integration into a research database and making results available to the clinical team. RESULTS: Clinical staff approached the parents of 41 infants; 38 completed the e-registration form and 30 signed the e-consent. The digital version of the PARCA-R was completed by the parents of 21 of 23 children who reached the appropriate age window. Clinicians and parents found the system easy to use. Only one parent declined permission to integrate data into the National Neonatal Research Database for approved secondary purposes. DISCUSSION: This electronic data collection system and associated automated processes enabled efficient systematic capture of data on language and cognitive development in high-risk children, suitable for national delivery at scale.

Thermoregulation and golden hour practices in extremely preterm infants: an international survey.

BACKGROUND: Are thermoregulation and golden hour practices in extremely preterm (EP) infants comparable across the world? This study aims to describe these practices for EP infants based on the neonatal intensive care unit's (NICUs) geographic region, country's income status and the lowest gestational age (GA) of infants resuscitated. METHODS: The Director of each NICU was requested to complete the e-questionnaire between February 2019 and August 2021. RESULTS: We received 848 responses, from all geographic regions and resource settings. Variations in most thermoregulation and golden hour practices were observed. Using a polyethylene plastic wrap, commencing humidity within 60 min of admission, and having local protocols were the most consistent practices (>75%). The odds for the following practices differed in NICUs resuscitating infants from 22 to 23 weeks GA compared to those resuscitating from 24 to 25 weeks: respiratory support during resuscitation and transport, use of polyethylene plastic wrap and servo-control mode, commencing ambient humidity >80% and presence of local protocols. CONCLUSION: Evidence-based practices on thermoregulation and golden hour stabilisation differed based on the unit's region, country's income status and the lowest GA of infants resuscitated. Future efforts should address reducing variation in practice and aligning practices with international guidelines. IMPACT: A wide variation in thermoregulation and golden hour practices exists depending on the income status, geographic region and lowest gestation age of infants resuscitated. Using a polyethylene plastic wrap, commencing humidity within 60 min of admission and having local protocols were the most consistent practices. This study provides a comprehensive description of thermoregulation and golden hour practices to allow a global comparison in the delivery of best evidence-based practice. The findings of this survey highlight a need for reducing variation in practice and aligning practices with international guidelines for a comparable health care delivery.

Global variation in skin injures and skincare practices in extremely preterm infants.

BACKGROUND: Globally, are skincare practices and skin injuries in extremely preterm infants comparable? This study describes skin injuries, variation in skincare practices and investigates any association between them. METHODS: A web-based survey was conducted between February 2019 and August 2021. Quantifying skin injuries and describing skincare practices in extremely preterm infants were the main outcomes. The association between skin injuries and skincare practices was established using binary multivariable logistic regression adjusted for regions. RESULTS: Responses from 848 neonatal intensive care units, representing all geographic regions and income status groups were received. Diaper dermatitis (331/840, 39%) and medical adhesive-related skin injuries (319/838, 38%) were the most common injuries. Following a local skincare guideline reduced skin injuries [medical adhesive-related injuries: adjusted odds ratios (aOR) = 0.63, 95% confidence interval (CI) = 0.45-0.88; perineal injuries: aOR = 0.66, 95% CI = 0.45-0.96; local skin infections: OR = 0.41, 95% CI = 0.26-0.65; chemical burns: OR = 0.46, 95% CI = 0.26-0.83; thermal burns: OR = 0.51, 95% CI = 0.27-0.96]. Performing skin assessments at least every four hours reduced skin injuries (abrasion: aOR = 0.48, 95% CI = 0.33-0.67; pressure: aOR = 0.51, 95% CI = 0.34-0.78; diaper dermatitis: aOR = 0.71, 95% CI = 0.51-0.99; perineal: aOR = 0.52, 95% CI = 0.36-0.75). Regional and resource settings-based variations in skin injuries and skincare practices were observed. CONCLUSIONS: Skin injuries were common in extremely preterm infants. Consistency in practice and improved surveillance appears to reduce the occurrence of these injuries. Better evidence regarding optimal practices is needed to reduce skin injuries and minimize practice variations.

Characteristics and incidence of transfusion-associated necrotizing enterocolitis in the UK.

Background and aims: The etiology of necrotizing enterocolitis (NEC) is unclear and postulated as being multifactorial. It has been suggested that one causative factor is the transfusion of packed red blood cells (PRBCs) leading to the disease entity commonly referred to as transfusion-associated NEC (TANEC). TANEC has been reported in North America but its incidence has not been formally investigated in the UK. Our aims were to identify the incidence of NEC and TANEC in tertiary-level UK neonatal units and to describe characteristics of TANEC cases.Materials and methods: Using strict case definitions for NEC and TANEC, we undertook a retrospective review to estimate the incidence of TANEC cases occurring in four UK tertiary-level centers during a 38-month period.Results: Of 8007 consecutive neonatal admissions of all gestations to the four centers, 68 babies went on to develop NEC and all affected infants were of very low birth weight (VLBW); 34 of these had previously received a transfusion of PRBCs but did not fit the diagnostic criteria for TANEC, whereas 15 (22%) of the 68 babies with NEC qualified as TANEC cases. UK cases occurred at an earlier postnatal age than cases reported in multiple large North American series and were of a lower birth weight.Conclusions: We have confirmed the presence of TANEC in the UK VLBW neonatal population. Its incidence lies within the wide range described in previous reports of this phenomenon globally, though with some local variation in characteristics. Further work is needed to clarify causation, pathophysiology, and possible mechanisms of prevention of TANEC.

Improving infant outcomes through implementation of a family integrated care bundle including a parent supporting mobile application.

OBJECTIVE: The aim of the Integrated Family Delivered Care (IFDC) programme was to improve infant health outcomes and parent experience through education and competency-based training. DESIGN: In collaboration with veteran parents' focus groups, we created an experienced co-designed care bundle including IFDC mobile application, which together with staff training programme comprised the IFDC programme. Infant outcomes were compared with retrospective controls in a prepost intervention analysis. MAIN OUTCOME MEASURES: The primary outcome measure was the length of stay (LOS). RESULTS: Between April 2017 and May 2018, 89 families were recruited; 37 infants completed their entire care episode in our units with a minimum LOS >14 days. From a gestational age (GA) and birth weight-matched retrospective cohort, 57 control infants were selected. Data were also analysed for subgroup under 30 weeks GA (n=20).Infants in the IFDC group were discharged earlier: median corrected GA (36+0 (IQR 35+0-38+0) vs 37+1 (IQR 36+3-38+4) weeks; p=0.003), with shorter median LOS (41 (32-63) vs 55 (41-73) days; p=0.022). This was also evident in the subgroup <30 weeks GA (61 (39-82) vs 76 (68-84) days; p=0.035). Special care days were significantly lower in the IFDC group (30 (21-41) vs 40 (31-46); p=0.006). The subgroup of infants (<30 weeks) reached full suck feeding earlier (median: 47 (37-76) vs 72 (66-82) days; p=0.006). CONCLUSION: This is the first reported study from a UK tertiary neonatal unit demonstrating significant benefits of family integrated care programme. The IFDC programme has significantly reduced LOS, resulted in the earlier achievement of full enteral and suck feeds.

Serial Clustering of Late-Onset Group B Streptococcal Infections in the Neonatal Unit: A Genomic Re-evaluation of Causality.

Background: Invasive Group B streptococcus (GBS) is a major cause of serious neonatal infection. Current strategies to reduce early-onset GBS disease have no impact on late-onset disease (LOD). Although GBS LOD is viewed as a sporadic event in the community, LOD arising within the neonatal intensive care unit (ICU) raises questions about mode of acquisition. Methods: Following a cluster of 4 GBS LOD cases, enhanced surveillance for all GBS LOD was undertaken over 2 years in the neonatal ICU supported by neonatal rectal screening. GBS isolates were serotyped and genome-sequenced. Results: Twelve late -onset invasive GBS episodes were identified (incidence 0.6/1000 live births). Genomic analysis revealed that 11/12 GBS isolates (92%) were linked to at least one other LOD isolate. Isolates from the first cluster were serotype V, resistant to macrolides and lincosamides, and sequencing confirmed isolates were indistinguishable, or distinguishable by only one SNP difference, from each other. Rectal carriage was rare. Prospective surveillance identified three further clusters of LOD due to serotypes Ia (3 cases), Ib (2 cases), and III (2 cases), that would not have been identified without surveillance and genome sequencing, leading to a re-evaluation of interventions required to prevent GBS LOD. Conclusion: Acquisition routes for LOD GBS in the neonatal ICU are poorly understood; cases may not necessarily be sporadic. Within this neonatal ICU, our data suggest that a single case of LOD GBS sepsis should be considered a potential nosocomial transmission event warranting prompt investigation, heightened infection prevention vigilance and action where required.

Determinants of Carboxyhemoglobin Levels and Relationship with Sepsis in a Retrospective Cohort of Preterm Neonates.

Carboxyhemoglobin levels in blood reflect endogenous carbon monoxide production and are often measured during routine blood gas analysis. Endogenous carbon monoxide production has been reported to be increased during sepsis, but carboxyhemoglobin levels have not been thoroughly evaluated as a biomarker of sepsis. We sought to determine whether carboxyhemoglobin levels were elevated during sepsis in a high risk population of premature neonates. We conducted a retrospective cohort study of 30 infants in two neonatal intensive care units using electronic medical and laboratory records. The majority of infants were extremely premature and extremely low birth weight, and 25 had at least one episode of sepsis. We collected all carboxyhemoglobin measurements during their in-patient stay and examined the relationship between carboxyhemoglobin and a variety of clinical and laboratory parameters, in addition to the presence or absence of sepsis, using linear mixed-effect models. We found that postnatal age had the most significant effect on carboxyhemoglobin levels, and other significant associations were identified with gestational age, hemoglobin concentration, oxyhemoglobin saturation, and blood pH. Accounting for these covariates, there was no significant relationship between the onset of sepsis and carboxyhemoglobin levels. Our results show that carboxyhemoglobin is unlikely to be a clinically useful biomarker of sepsis in premature infants, and raise a note of caution about factors which may confound the use of carbon monoxide as a clinical biomarker for other disease processes such as hemolysis.

Resuscitation of extremely preterm infants - controversies and current evidence.

Despite significant advances in perinatal medicine, the management of extremely preterm infants in the delivery room remains a challenge. There is an increasing evidence for improved outcomes regarding the resuscitation and stabilisation of extremely preterm infants but there is a lack of evidence in the periviable (gestational age 23-25 wk) preterm subgroup. Presence of an experienced team during the delivery of extremely preterm infant to improve outcome is reviewed. Adaptation from foetal to neonatal cardiorespiratory haemodynamics is dependent on establishing an optimal functional residual capacity in the extremely preterm infants, thus enabling adequate gas exchange. There is sufficient evidence for a gentle approach to stabilisation of these fragile infants in the delivery room. Evidence for antenatal steroids especially in the periviable infants, delayed cord clamping, strategies to establish optimal functional residual capacity, importance of temperature control and oxygenation in delivery room in extremely premature infants is reviewed in this article.

Antiseptic use in the neonatal intensive care unit - a dilemma in clinical practice: An evidence based review.

Infants in the neonatal intensive care unit are highly susceptible to healthcare associated infections (HAI), with a substantial impact on mortality, morbidity and healthcare costs. Effective skin disinfection with topical antiseptic agents is an important intervention in the prevention or reduction of HAI. A wide array of antiseptic preparations in varying concentrations and combinations has been used in neonatal units worldwide. In this article we have reviewed the current evidence of a preferred antiseptic of choice over other agents for topical skin disinfection in neonates. Chlorhexidine (CHG) appears to be a promising antiseptic agent; however there exists a significant concern regarding the safety of all agents used including CHG especially in preterm and very low birth weight infants. There is substantial evidence to support the use of CHG for umbilical cord cleansing and some evidence to support the use of topical emollients in reducing the mortality in infants born in developing countries. Well-designed large multicentre randomized clinical trials are urgently needed to guide us on the most appropriate and safe antiseptic to use in neonates undergoing intensive care, especially preterm infants.

GATA1-mutant clones are frequent and often unsuspected in babies with Down syndrome: identification of a population at risk of leukemia.

Transient abnormal myelopoiesis (TAM), a preleukemic disorder unique to neonates with Down syndrome (DS), may transform to childhood acute myeloid leukemia (ML-DS). Acquired GATA1 mutations are present in both TAM and ML-DS. Current definitions of TAM specify neither the percentage of blasts nor the role of GATA1 mutation analysis. To define TAM, we prospectively analyzed clinical findings, blood counts and smears, and GATA1 mutation status in 200 DS neonates. All DS neonates had multiple blood count and smear abnormalities. Surprisingly, 195 of 200 (97.5%) had circulating blasts. GATA1 mutations were detected by Sanger sequencing/denaturing high performance liquid chromatography (Ss/DHPLC) in 17 of 200 (8.5%), all with blasts >10%. Furthermore low-abundance GATA1 mutant clones were detected by targeted next-generation resequencing (NGS) in 18 of 88 (20.4%; sensitivity ∼0.3%) DS neonates without Ss/DHPLC-detectable GATA1 mutations. No clinical or hematologic features distinguished these 18 neonates. We suggest the term "silent TAM" for neonates with DS with GATA1 mutations detectable only by NGS. To identify all babies at risk of ML-DS, we suggest GATA1 mutation and blood count and smear analyses should be performed in DS neonates. Ss/DPHLC can be used for initial screening, but where GATA1 mutations are undetectable by Ss/DHPLC, NGS-based methods can identify neonates with small GATA1 mutant clones.

Perinatal network consensus guidelines on the resuscitation of extremely preterm infants born at <27 weeks' gestation.

In spite of recent advances in perinatal care and an increase in survival of extremely preterm infants over the last few years, there remains a lack of consensus about practical aspects of resuscitation of extremely preterm infants born before 27 weeks' gestation. With this in the background, the working group of one of the Perinatal Networks in London, UK, set out to conduct a survey to explore the opinions of the doctors and nurses on resuscitation practices of infants born before 27 weeks' gestation, with the aim of developing consensus guidelines. The working group emailed a questionnaire to all neonatal units within the Perinatal Network to seek the views of paediatric medical and nursing staff on resuscitation of infants born at <27 weeks' gestation. The questionnaire was returned anonymously by post. The responses highlighted the difference of opinion that currently exists amongst the clinicians and nurses across the world around the resuscitation practices of extremely preterm infants; yet at the same time, there seemed to be some consensus on certain issues. Based on the survey (questionnaire) results and already existing literature, the working group of the North West London Perinatal Network (NWLPN) produced and implemented specific consensus guidelines on practical aspects of resuscitation for infants born before 27 weeks' gestation for the network. The network plans to audit these guidelines in future and also produce a parent information leaflet explaining the relevance of these guidelines.

Parenteral nutrition--ascites with acute renal failure as a complication from an umbilical venous catheter in an extremely low birth weight infant.

Umbilical venous catheters (UVCs) are frequently used in the neonatal intensive care setting and play a crucial role in the management of extremely low birth weight (ELBW) infants. One very rare complication reported is parenteral nutrition (PN) ascites secondary to vessel perforation or hepatic erosion by PN at the tip of malpositioned UVCs with various hepatic lesions. We describe a case of early onset PN ascites with no obvious associated hepatic lesion but complicated by pre-renal acute renal failure in an ELBW infant with the tip positioned between the 10th and 11th thoracic vertebrae.

Unusually late presentation of lactobezoar leading to necrotising enterocolitis in an extremely low birthweight infant.

The present report concerns a case of unusually late presentation of lactobezoar, or inspissated milk curd obstruction, leading to necrotising enterocolitis (NEC) in an extremely low birthweight (ELBW) boy infant, born at 26 weeks gestation with a birth weight of 750 g. He deteriorated acutely on day 84 of postnatal age (corrected age 38 weeks) needing intermittent positive pressure ventilation (IPPV). Over the next 3 days he developed signs of NEC, though a radiograph showed no diagnostic features. In view of increasing abdominal distension, silent abdomen and increasing ventilatory requirements, an emergency exploratory laparotomy was performed. The laparotomy revealed inspissated milk curd obstruction in the terminal ileum. There was also a small area of NEC at the ileocaecal valve. A limited hemicolectomy was performed with creation of an ileostomy and mucous fistula. Following this procedure his clinical status improved. Feeds were reintroduced after 7 days and he was on full enteral feeds by 14 days.

An asymptomatic presentation of gastric outlet obstruction secondary to congenital antral web in an extremely preterm infant.

A case of gastric outlet obstruction secondary to antral web in a preterm infant born at 25 weeks gestation is reported. The diagnosis was suspected on plain abdominal radiograph performed postnatally to confirm position of the umbilical catheters. On the initial radiograph (at age 1 h), a dilated stomach with a gasless abdomen was noted. A repeat chest and abdominal radiograph performed 24 h later due to increased ventilatory requirements showed persistence of this finding and upper gastrointestinal obstruction was suspected. An upper gastrointestinal contrast study confirmed the diagnosis of gastric outlet obstruction. The infant underwent a curative pyloroplasty on day 11 of life. The postoperative course was uneventful.

Effect of indomethacin on closure of ductus arteriosus in very-low-birthweight neonates.

AIM: To identify factors related to indomethacin non-responsiveness for patent ductus arteriosus (PDA) closure in very-low-birthweight (VLBW) neonates. METHODS: A chart review of 107 VLBW neonates with a clinical diagnosis of PDA who received indomethacin, admitted to a tertiary neonatal intensive care unit in Toronto, Canada, was conducted (study period November 2001 to October 2003). Positive responders were those with no clinical evidence of PDA for 72 h after indomethacin. RESULTS: Response to the first course of indomethacin was 75%, and to the second course 67% among initial responders. Higher CRIB score (OR 1.15, 95% CI 1.02-1.31) and early surfactant administration (OR 3.74, 95% CI 1.04-13.47) were associated with non-responsiveness to indomethacin. CONCLUSION: Indomethacin is effective for PDA closure. The response rate diminished with subsequent courses. Early surfactant and severity of illness at admission were associated with non-responsiveness to indomethacin.