Balancing survival and suffering: factors influencing parental decision making after periviable consultation.

Objective: The objective of this study was to identify factors birthing parents consider related to potential resuscitation of a periviable infant.

Study Design: Birthing parents who received a prenatal consult from a newborn intensive care unit provider between 22.0 and 24.

Recognition and Management of Delirium in the Neonatal Intensive Care Unit: Case Series From a Single-Center Level 4 Intensive Care Unit.

Delirium often goes unrecognized in neonates and children because of lack of experience in evaluating behavior and cognition, insufficient awareness of the prevalence, and nondistinctive symptoms in this population. Although there are increasing reports of the presence of delirium in neonates, there are few data to guide the pharmacologic treatment in this population. In this retrospective single-center case series, we present our experience using quetiapine to treat delirium in 9 medically complex neonates.

An Ethical Analysis of Therapy for Severe Congenital Kidney and Urinary Tract Anomalies.

Technological advancements before and after delivery have greatly altered the counseling of pregnant patients facing a fetal diagnosis of severe oligohydramnios or anhydramnios secondary to congenital anomalies of the kidneys and urinary tract. Once considered a nearly uniformly lethal abnormality, long-term survival may now be possible secondary to prenatal innovations aimed at restoring the amniotic fluid volume and the availability of more advanced neonatal dialysis techniques. However, these available therapies are far from perfect.

Recognition and Management of Delirium in the Neonatal Intensive Care Unit: Case Series From a Single-Center Level IV Intensive Care Unit.

Delirium often goes unrecognized in neonates and children because of lack of experience in evaluating behavior and cognition, insufficient awareness of the prevalence, and nondistinctive symptoms in this population. Although there are increasing reports of the presence of delirium in neonates, there are little data to guide the pharmacologic treatment in this population. In this retrospective single-center case series, we present our experience using quetiapine to treat delirium in 9 medically complex neonates.

Interdisciplinary fetal neurology care: Current practice, challenges, and future directions.

As the field of fetal-neonatal neurology has expanded over the past 2 decades with increasingly complex diagnoses, multidisciplinary collaboration with many subspecialties including genetics, neonatology, obstetrics, maternal fetal medicine, surgical sub-specialties, cardiology, radiology, palliative care, and ethics has needed to evolve to strive to offer optimal patient care. While comprehensive care delivery with an inter-disciplinary approach is preferred, there are often barriers based on numerous health disparities especially in resource limited settings. Even in the context of comprehensive care, diagnostic and prognostic uncertainty lead to challenges for providers during fetal neurology consultations.

Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment.

Objective: To evaluate whether racial and socioeconomic inequities in pediatric palliative care utilization extend to children with high-intensity neurologic impairment (HI-NI), which is a chronic neurological diagnosis resulting in substantial functional morbidity and mortality.

Study Design: We conducted a retrospective study of patients with HI-NI who received primary care services at a tertiary care center from 2014 through 2019. HI-NI diagnoses that warranted a palliative care referral were identified by consensus of a multidisciplinary team.

Navigating the post-Dobbs landscape: ethical considerations from a perinatal perspective.

Restrictive abortion laws have impacts reaching far beyond the immediate sphere of reproductive health, with cascading effects on clinical and ethical aspects of neonatal care, as well as perinatal palliative care. These laws have the potential to alter how families and clinicians navigate prenatal and postnatal medical decisions after a complex fetal diagnosis is made. We present a hypothetical case to explore the nexus of abortion care and perinatal care of fetuses and infants with life-limiting conditions.

Provider moral distress in caring for tracheostomy and ventilator dependent children: A single institution cross-sectional evaluation.

Objective: To determine levels of moral distress in a pediatric unit caring for patients with tracheostomy/ventilator dependence.

Hypothesis: Moral distress will be significant in a dedicated pediatric trach/vent unit.

Methods: The Moral Distress Survey-Revised (MDS-R) is a 21-question survey measuring moral distress in pediatrics.

Propofol Sedation Washouts in Critically Ill Infants: A Case Series.

Medically complex infants are experiencing longer hospital stays, more invasive procedures, and increasingly involved therapeutic interventions that often require long-term analgesia and sedation. This is most commonly achieved with continuous intravenous infusions of opioids and benzodiazepines. There are times when patients develop a tolerance for these medications or the clinical scenario necessitates a rapid wean of them.

Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope.

Fetal neurology is a rapidly evolving and expanding field. Discussions about diagnosis, prognosis, treatment options, and goals of care often begin in the antenatal period. However, there are inherent challenges to fetal counseling of neurological diagnoses due to limitations of fetal imaging, prognostic uncertainty, and variability in neurodevelopmental outcomes.

A novel RYR1 variant in an infant with a unique fetal presentation of central core disease.

Ryanodine receptor type 1-related disorder (RYR1-RD) is the most common subgroup of congenital myopathies with a wide phenotypic spectrum ranging from mild hypotonia to lethal fetal akinesia. Genetic testing for myopathies is imperative as the diagnosis informs counseling regarding prognosis and recurrence risk, treatment options, monitoring, and clinical management. However, diagnostic challenges exist as current options are limited to clinical suspicion prompting testing including: single gene sequencing or familial variant testing, multi-gene panels, exome, genome sequencing, and invasive testing including muscle biopsy.

The patient/physician relationship in a post-Roe world: a neonatologist viewpoint.

The Supreme Court ruling in Dobbs v. Jackson Women's Health Organization has far-reaching implications that go beyond the practice of obstetrics and gynecology. The ruling and subsequent laws and bills impact many specialties and have implications for healthcare as a whole.

Perinatal Outcomes of Fetuses and Infants Diagnosed with Trisomy 13 or Trisomy 18.

Objectives: To identify factors associated with prenatal, perinatal, and postnatal outcomes, and determine medical care use for fetuses and infants with trisomy 13 (T13) and trisomy 18 (T18).

Study Design: This population-based retrospective cohort study included all prenatal and postnatal diagnoses of T13 or T18 in the greater Cincinnati area from January 1, 2012, to December 31, 2018. Overall survival, survival to hospital discharge, medical management, and maternal, fetal, and neonatal characteristics are analyzed.

Alobar holoprosencephaly: Exploring mothers' perspectives on prenatal decision-making and prognostication.

Objectives: Parents receiving a prenatal diagnosis of alobar holoprosencephaly (HPE) often experience uncertainty regarding the pregnancy prognosis. There is little known about how best to counsel and support families receiving the diagnosis. This study explored parental experiences and wishes after receiving a prenatal diagnosis of alobar HPE.

Neonatal End-of-Life Symptom Management.

Despite advances in technology and treatment options, over 15,000 neonates die each year in the United States. The majority of the deaths, with some estimates as high as 80%, are the result of a planned redirection of care or comfort measures only approach to care. When curative or life-prolonging interventions are not available or have been exhausted, parents focus on preserving quality of life and eliminating needless suffering.

Moral Distress in the Neonatal Intensive Care Unit: What Is It, Why It Happens, and How We Can Address It.

Moral distress is prevalent in the neonatal intensive care unit (NICU), where decisions regarding end-of-life care, periviable resuscitation, and medical futility are common. Due to its origins in the nursing literature, moral distress has primarily been reported among bedside nurses in relation to the hierarchy of the medical team. However, it is increasingly recognized that moral distress may exist in different forms than initially described and that healthcare professions outside of nursing experience it.

Perinatal Palliative Care Birth Planning as Advance Care Planning.

A significant number of pregnancies are complicated by a fetus with a life-limiting diagnosis. As diagnoses are made earlier in the pregnancy, families experience anticipatory grief and are faced with navigating goals of care for a baby that has yet to be born. With the support of the care team, families can begin to grieve, plan, and make meaningful memories during the duration of the pregnancy, the birth of their baby, and life of the child.

Electronic Health Record-Embedded Decision Support Platform for Morphine Precision Dosing in Neonates.

Morphine is the opioid most commonly used for neonatal pain management. In intravenous form, it is administered as continuous infusions and intermittent injections, mostly based on empirically established protocols. Inadequate pain control in neonates can cause long-term adverse consequences; however, providing appropriate individualized morphine dosing is particularly challenging due to the interplay of rapid natural physiological changes and multiple life-sustaining procedures in patients who cannot describe their symptoms.

Two cases of atypical twinning: Phenotypically discordant monozygotic and conjoined twins.

Atypical twinning highlights that complex mechanisms responsible for twinning are not fully understood and may give further insight into the mechanisms involved. To assume that phenotypic difference is the result of dizygotic twinning would be erroneous and could have significant implications in the care and counseling provided to these patients.

Birth Planning in Uncertain or Life-Limiting Fetal Diagnoses: Perspectives of Physicians and Parents.

Providers often use birth plans to document parents' wishes for their fetus with a life-limiting condition. The objective of the study was to (1) discover important components of a birth plan for parents and providers who carry them out, and (2) understand the experience of parents and providers with birth plans. The study design involves mixed-methods, descriptive, exploratory survey.

End-of-life care in the neonatal intensive care unit: experiences of staff and parents.

Objective: The aim of the study is to determine the perceptions of end-of-life care practices and experience with infants who have died in the NICU among neonatologists, advanced practitioners, nurses, and parents, and also to determine perceived areas for improvement and the perceived value of a palliative care team.

Study Design: This descriptive, exploratory cross-sectional study using surveys consisting of 7-point Likert scales and free response comments was sent to all neonatologists (n = 14), advanced practitioners (n = 40), and nurses (n = 184) at Connecticut Children's Medical Center's neonatal intensive care units (NICUs) in April 2013 and to all parents whose infants died in these NICUs from July 1, 2011, to December 31, 2012 (n = 28).

Results: The response rates were 64.