AIM:In extremely low birth weight infants, fluid overload has been associated with bronchopulmonary dysplasia and death. Excessive weight loss may increase the risk of meconium obstruction and intestinal perforation. As these infants display oliguria followed by polyuria, we embarked on a diuresis-led volume replacement strategy as of January 2020. METHODS:This single-centre analysis presents data of infants <1000 g birth weight surviving for more than 3 days admitted 2017-2019 (n = 217, daily volume increase) versus 2020-2022 (n = 2022, diuresis-led volume replacement). RESULTS:The second cohort had lower gestational age (median [interquartile range]: 253/7 [243/7-264/7] vs. 263/7 [251/7-282/7] weeks), less antenatal steroids (58% vs. 69%), more indomethacin (66% vs. 47%) and higher initial diuresis (5.6 [4.9-6.8] vs. 4.8 [4.2-5.5] mL/kg/h) but did not differ by relative weight loss at Day 7 of life. Employing binary logistic regression with gestational age, antenatal steroids and indomethacin as covariates, the cohorts did not differ by rates of patent ductus arteriosus, abdominal surgery or severe retinopathy of prematurity, while there were significant declines in sepsis (from 32% to 19%), bronchopulmonary dysplasia (from 26% to 23%) and mortality (from 13% to 7%). CONCLUSION:Diuresis-led volume replacement appears to be safe and maybe beneficial.

Importance:Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the general public have not yet been investigated. Objective:To assess (1) attitudes in the general public toward euthanasia and withdrawal of life-prolonging treatment in neonates with severe life-limiting conditions, (2) knowledge of current German recommendations, and (3) values in the German society regarding ethical issues and proxy decisions at the beginning of life. Design, Setting, and Participants:This cross-sectional study was performed in Germany and used an exploratory design to analyze responses to an interview conducted by an independent, established commissioned polling institute in March and April 2022. Participants were 16 years or older, with German language fluency and comprehension and living in Germany. Main Outcomes and Measures:Knowledge about recommendations for euthanasia and withdrawal of life-prolonging treatment as well as personal attitudes toward (1) euthanasia and withdrawal of life-prolonging treatment and (2) surrogate end-of-life decision-making for newborn infants were assessed. Results:The study included 2116 participants (1077 females [50.9%]; mean [SD] age 52.1 [18.7] years). Of the participants, 16.8% (311 of 1851) reported knowing the German recommendations for euthanasia and withdrawal of life-prolonging treatment for neonates. Euthanasia and withdrawal of life-prolonging treatment were supported by 64.7% (1369 of 2116) and 77.9% (1649 of 2116) of respondents, respectively. Shared decision-making between parents and physicians for neonates in end-of-life situations was supported by 65.6% of participants (1388). In situations where shared decision-making was not possible, 73.4% of respondents (1019 of 1388) put the ultimate decision to the parents. The magnitude of the associations was low between sociodemographic factors and views on ethical issues and customary practices involved in end-of-life decisions for neonates. Conclusions and Relevance:Results of this cross-sectional study suggested that most respondents were not aware of the national German recommendations for euthanasia and withdrawal of life-prolonging treatment for sick and extremely preterm newborns. When counseling parents of periviable newborns, clinicians may need to exert more effort in explaining the legal and ethical framework; a highly individualized approach is warranted.

In extremely low birth weight infants, fluid overload has been associated with bronchopulmonary dysplasia and death. Excessive weight loss may increase the risk of meconium obstruction and intestinal perforation. As these infants display oliguria followed by polyuria, we embarked on a diuresis-led volume replacement strategy as of January 2020. This single-centre analysis presents data of infants <1000 g birth weight surviving for more than 3 days admitted 2017–2019 ( n  = 217, daily volume increase) versus 2020–2022 ( n  = 2022, diuresis-led volume replacement). The second cohort had lower gestational age (median [interquartile range]: 25 3 / 7 [24 3 / 7 –26 4 / 7 ] vs. 26 3 / 7 [25 1 / 7 –28 2 / 7 ] weeks), less antenatal steroids (58% vs. 69%), more indomethacin (66% vs. 47%) and higher initial diuresis (5.6 [4.9–6.8] vs. 4.8 [4.2–5.5] mL/kg/h) but did not differ by relative weight loss at Day 7 of life. Employing binary logistic regression with gestational age, antenatal steroids and indomethacin as covariates, the cohorts did not differ by rates of patent ductus arteriosus, abdominal surgery or severe retinopathy of prematurity, while there were significant declines in sepsis (from 32% to 19%), bronchopulmonary dysplasia (from 26% to 23%) and mortality (from 13% to 7%). Diuresis-led volume replacement appears to be safe and maybe beneficial.

Background: An increasing number of life-limiting conditions (LLCs) is diagnosed prenatally, presenting providers with the ability to present perinatal palliative care (PnPC) services as an option. Objective: To (1) determine the profile characteristics of patients referred for prenatal palliative care counseling to Charité Universitätsmedizin Berlin, Germany; (2) evaluate pregnancy outcome; and (3) analyze the additional human resources per family required to provide specialized PnPC. Methods: Retrospective chart review of pregnant women and infants with potentially LLCs referred for prenatal palliative care counseling between 2016 and 2020. Results: A total of 115 women were referred for prenatal palliative care counseling. Most cases (57.6%) comprised trisomy 13 or 18 (n = 36) and complex congenital conditions (n = 32). Other life-limiting diagnoses included renal agenesis/severe dysplasia (n = 19), congenital heart diseases (n = 18), neurological anomalies (n = 8), and others (n = 5). In 72.0% of cases (n = 85) parents decided to continue pregnancy and plan for palliative birth. Fifty deliveries resulted in a liveborn infant: 33 of these died in the delivery room, 9 neonates died after admission to rooming-in on one of our neonatal wards, and 8 were discharged home or to a hospice. Total human resources (median, range) provided were 563 (0-2940) minutes for psychosocial and 300 (0-720) minutes for medical specialized PnPC per referral. Conclusions: Our data confirm previously observed characteristics of diagnoses, referrals, and outcomes. The provision of specialized and interprofessional PnPC services accounted for ∼14 hours per case of additional human resources.

Against the background of a society that tends to underrate the grief experienced by parents whose infants have died prematurely, the model "SORROWFUL" is presented here with the intent to highlight the significance of the death of a newborn for the affected family. It is a supportive tool in counseling for parents grieving the (impending) loss of an infant(s) during peri- or neonatal life and may be implemented within the parental psychosocial support setting beginning with the initial diagnosis until well after the death of the child. The model intentionally allows flexibility for cultural and individual adaptation, for the accommodation to the varying needs of the affected parents, as well as to available local resources.

Einleitung Die Trisomie 18 (T18) ist die zweithäufigste autosomale Trisomie. Ein Großteil der Eltern, die pränatal mit dieser Diagnose konfrontiert sind, entscheidet sich aufgrund der ungünstigen Prognose für einen Schwangerschaftsabbruch. Die seltenere Form der Mosaiktrisomie 18 weist aufgrund der gewebespezifischen Verteilung eine breite klinische Heterogenität auf. Im vorliegenden Fall berichten wir zum ersten Mal über eine organspezifische genetische Analyse aller drei Keimblätter eines Patienten mit Trisomie 18-Mosaik

Eltern von sterbenden Neugeborenen haben meist nur wenig Zeit in ihre Elternrolle hineinzuwachsen. Bindungs- und Beziehungsaufbau müssen mitunter parallel zum Verabschiedungsprozess erfolgen. Hoffnung und Angst, Glück und Trauer stehen eng nebeneinander. Die palliative Betreuung von sterbenden Neugeborenen und die Trauerbegleitung der betroffenen Familien vor, während und nach der Geburt gehört zu einer der größten Herausforderungen pflegerischer, psychosozialer und ärztlicher Tätigkeit.

Palliative care in the delivery room is an interprofessional and interdisciplinary challenge addressing the dying newborn and parents as well as the caregivers. It differs in some significant aspects from palliative care in the neonatal intensive care unit. Clinical experience suggests that many details regarding this unique specialized palliative care environment are not well known, which may result in some degree of insecurity and emotional distress for health care providers. This article presents basic background information regarding the provision of palliative care to newborns within the delivery room. It offers orientation along with a preliminary set of practical recommendations regarding the following central issues: (i) the basic elements of perinatal palliative care, (ii) the range of non-pharmacological and pharmacological interventions available for infant symptom control near the end of life, (iii) meeting the personal psychological, emotional, and spiritual needs of the parents, and (iv) care and self-care for medical personnel.

Objective: To investigate and compare nurses' perceived care-related distress and experiences in end-of-life situations in neonatal and pediatric intensive care units. Study design: Single-center, cross-sectional survey. Administration of an anonymous self-report questionnaire survey to nurses of two tertiary neonatal intensive care units (NICUs), and two tertiary pediatric intensive care units (PICUs) in Berlin, Germany. Results: Seventy-three (73/227, response rate 32.2%) nurses completed surveys. Both, NICU (32/49; 65.3%) and PICU (24/24; 100.0%) nurses, reported “staffing shortages” to be the most frequent source of distress in end-of-life situations. However, when asked for the most distressing factor, the most common response by NICU nurses (17/49) was “lack of clearly defined and agreed upon therapeutic goals”, while for PICU nurses (12/24) it was “insufficient time and staffing”. No significant differences were found in reported distress-related symptoms in NICU and PICU nurses. The interventions rated by NICU nurses as most helpful for coping were: “discussion time before the patient's death” (89.6%), “team support” (87.5%), and “discussion time after the patient's death” (87.5%). PICU nurses identified “compassion” (98.8%), “team support”, “personal/private life (family, friends, hobbies)”, and “discussion time after the patient's death” (all 87.5%) as most helpful. Conclusions: Distress-related symptoms as a result of end-of-life care were commonly reported by NICU and PICU nurses. The most frequent and distressing factors in end-of-life situations might be reduced by improving institutional/organizational factors. Addressing the consequences of redirection of care, however, seems to be a more relevant issue for the relief of distress associated with end-of-life situations in NICU, as compared to PICU nurses.