Scholars@Duke
Monica Elizabeth Lemmon

Monica Elizabeth Lemmon

Associate Professor of Pediatrics
Pediatrics, Neurology
monica.lemmon@duke.edu
DUMC 3936, Durham, NC 27710
DUMC 3936, Durham, NC 27710

Selected Publications

Profiles and Predictors of Neurodevelopmental Outcome at 5-6 Years in Children With a History of Acute Provoked Neonatal Seizures.

Journal Article Ann Neurol · January 3, 2026 OBJECTIVE: The objective of this study was to characterize the neurodevelopment and risk factors for impairment at age 5 to 6 years after acute provoked neonatal seizures. METHODS: Multicenter study of neonates with acute provoked seizures. Wechsler Presch ... Full text Link to item Cite

Inpatient morbidities and medical technology use at 2 years among extremely preterm infants.

Journal Article Pediatr Res · December 16, 2025 BACKGROUND: Extremely preterm infants may use medical technology after discharge from neonatal intensive care. The aim of the study was to determine which inpatient morbidities have the strongest associations with technology at toddler-age follow-up. METHO ... Full text Link to item Cite

Postneonatal epilepsy after acute provoked neonatal seizures: Incidence, predictors, and clinical burden in a multicenter cohort followed through early childhood.

Journal Article Epilepsia · December 2025 OBJECTIVE: Epilepsy is a known potential outcome following acute provoked neonatal seizures, but its onset, treatment patterns, and health care utilization through childhood remain poorly characterized. This study aimed to define the incidence and timing o ... Full text Link to item Cite

Proceedings of the First Neuropalliative Care Research Summit (NeuroCARES).

Journal Article J Pain Symptom Manage · December 2025 Neuropalliative care is a rapidly evolving field of healthcare that is essential for addressing the complex needs of individuals with serious neurological disorders and their care partners. Effectively addressing these needs will require advances in Neurop ... Full text Link to item Cite

Communicating neurological prognosis in the prenatal period: a narrative review and practice guidelines.

Journal Article Pediatr Res · November 2025 Clinicians may face an array of challenges in conducting fetal neurological consultations including prognostic uncertainty, a lack of training in fetal counseling, and limited opportunity to build rapport with families. In this setting, it is critical to e ... Full text Link to item Cite

Fetal intracerebral hemorrhage: review of the literature and practice considerations.

Journal Article Pediatr Res · November 2025 Fetal intracerebral hemorrhage is increasingly recognized on prenatal imaging. In this review, we discuss clinically relevant aspects of fetal intracerebral hemorrhage, including germinal matrix-intraventricular hemorrhage, as well as intraparenchymal hemo ... Full text Link to item Cite

Parental experience of having a child with hypoxic ischaemic encephalopathy: a qualitative study.

Journal Article Arch Dis Child Fetal Neonatal Ed · October 13, 2025 OBJECTIVE: To explore families' experiences of hypoxic ischaemic encephalopathy (HIE) care in the National Health Service (NHS) and the impact of HIE on families. DESIGN: Semistructured interviews (n=28) sampled to maximise variation, were conducted with p ... Full text Link to item Cite

Children With Severe Neurologic Impairment and Their Families in the PICU: A Secondary Qualitative Analysis to Assess Clinician-Family Collaboration and Mutuality.

Journal Article Pediatr Crit Care Med · September 1, 2025 OBJECTIVES: In children with severe neurologic impairment (SNI) admitted to the PICU, a trauma-informed approach to care may mitigate the effect of traumatic events on both parents and the child. We aimed to characterize the themes that impacted the trauma ... Full text Link to item Cite

Feasibility of an Intervention to Support Shared Decision-Making for Critically Ill Infants.

Journal Article J Pediatr · August 2025 OBJECTIVE: To develop and pilot an intervention to support communication and decision-making for critically ill infants. STUDY DESIGN: In this single-arm, mixed-methods, prospective, feasibility study, we enrolled infants, parents, and clinicians at a sing ... Full text Link to item Cite

Fetal malformations of cortical development: review and clinical guidance.

Journal Article Brain · June 3, 2025 Malformations of cortical development (MCDs) are a heterogeneous family of congenital brain malformations that originate from disturbed development of the cerebral cortex. MCDs can arise from primary genetic disorders that lead to dysfunction of the molecu ... Full text Link to item Cite

Difficult Conversations in Fetal-Neonatal Neurology: National Survey of Educational Experiences and Needs of Child Neurology Residents.

Journal Article Pediatr Neurol · June 2025 BACKGROUND: Fetal-neonatal neurology (FNN) is a growing subspecialty within child neurology that often involves difficult conversations with families regarding new neurological diagnoses and prognoses. We assessed child neurology residents' educational exp ... Full text Link to item Cite

Parent and Family Well-Being and Associated Risk Factors as Children with Neonatal Seizures Reach Preschool and School-Age: A Longitudinal Cohort Study.

Journal Article J Pediatr Clin Pract · June 2025 OBJECTIVE: To assess parent/family well-being when children with neonatal seizures reach 3-8 years of age and examine factors associated with parent/family well-being. METHODS: One parent per surviving infant in the Neonatal Seizure Registry-II was invited ... Full text Link to item Cite

Enhancing shared decision-making for infants in the intensive care unit: lessons from parents.

Journal Article Pediatr Res · April 17, 2025 BACKGROUND: Understanding parent preferences and experiences of decision-making can guide interventions to improve shared decision-making. We aimed to characterize how parents (1) incorporated values into decision-making, (2) evaluated clinician recommenda ... Full text Link to item Cite

Neuromonitoring practices for neonates with congenital heart disease: a scoping review.

Journal Article Pediatr Res · April 2025 Neonates with congenital heart disease (CHD) are at risk for adverse neurodevelopmental outcomes. This scoping review summarizes neuromonitoring methods in neonates with CHD. We identified 84 studies investigating the use of near-infrared spectroscopy (NIR ... Full text Link to item Cite

Fetal Callosal Anomalies: A Narrative Review and Practical Recommendations for Pediatric Neurologists.

Journal Article Pediatr Neurol · April 2025 Agenesis of the corpus callosum is a common indication for fetal neurology consultation, increasingly identified through advances in fetal sonography and fetal magnetic resonance imaging. Despite improvements in diagnostic accuracy, prognostic counseling i ... Full text Link to item Cite

Sleep Disorders Five Years After Acute Provoked Neonatal Seizures.

Journal Article J Pediatr · March 2025 OBJECTIVE: To evaluate whether abnormal sleep is associated with adverse outcomes for children who survived acute provoked neonatal seizures, and their parents. STUDY DESIGN: This 9-center study prospectively followed newborns with acute provoked seizures. ... Full text Link to item Cite

Prenatally Diagnosed Absent Septum Pellucidum and Septo-Optic Dysplasia: A Narrative Review and Practical Recommendations for Pediatric Neurologists.

Journal Article Pediatr Neurol · March 2025 Evaluation of the cavum septum pellucidum is required in standard second-trimester screening fetal anatomy ultrasound scans. The absence of septum pellucidum triggers further evaluation and referral for subspecialty counseling. Absence of septum pellucidum ... Full text Link to item Cite

Preferred Parental Language and Neurodevelopmental Outcomes Among Infants With Acute Provoked Neonatal Seizures in the United States.

Journal Article Pediatr Neurol · March 2025 BACKGROUND: Parental non-English language preference (NELP) is associated with worse pediatric health outcomes. However, little is known about its relationship with developmental outcomes in infants with neonatal seizures. This study evaluated the relation ... Full text Link to item Cite

Communication About Sudden Unexpected Death in Epilepsy: An Adaptation of the SPIKES Protocol.

Journal Article Pediatr Neurol · February 2025 BACKGROUND: Sudden unexpected death in epilepsy (SUDEP) is a common cause of premature death in children and adults with epilepsy. People with epilepsy and their caregivers prefer the risk of SUDEP to be disclosed by their clinicians; however, few tools ex ... Full text Link to item Cite

Neonatal Seizures and Associated Neurobehavioral Profiles in Preschool Age Children.

Journal Article Pediatr Neurol · February 2025 BACKGROUND: Neonatal seizures are common with acute brain injury. Up to 25% of survivors develop postneonatal epilepsy. We hypothesized postneonatal epilepsy diagnosed by age 24 months would increase risk for early markers of neurobehavioral disorders than ... Full text Link to item Cite

Discussion of Spirituality in Family Conferences of Infants With Neurologic Conditions.

Journal Article J Pain Symptom Manage · January 2025 INTRODUCTION: Spirituality serves as a mechanism to understand and cope with serious illness, yet little is known about how families and clinicians incorporate spirituality in pediatric family conferences. OBJECTIVES: We sought to characterize the frequenc ... Full text Link to item Cite

A Seat at the Table: Family Conferences for Infants with Neurological Conditions.

Journal Article J Palliat Med · January 2025 Objective: We aimed to characterize parents' perspectives on the value of and opportunities to improve conferences between parents of critically ill infants and the health care team. Background: The parent perspective on the value of family conferences in ... Full text Link to item Cite

Prenatally Diagnosed Holoprosencephaly: Review of the Literature and Practical Recommendations for Pediatric Neurologists.

Journal Article Pediatr Neurol · January 2025 Holoprosencephaly (HPE) is one of the most common malformations in embryonic development. HPE represents a continuum spectrum that involves the midline cleavage of forebrain structures. Facial malformations of varying degrees of severity are also observed. ... Full text Link to item Cite

" Trying to Grab Pieces of Hope " : Exploring the Experiences of Black and Hispanic Parents following a Congenital Heart Disease Diagnosis.

Journal Article AJP Rep · January 2025 Objective  Congenital heart disease (CHD) is an important contributor to pediatric morbidity and mortality. Unfortunately, disparities in the diagnosis and treatment of CHD exist across racial and ethnic groups. The objective of this study was to share the ... Full text Open Access Link to item Cite

Life After Neonatal Seizures: Characterizing the Longitudinal Parent Experience.

Journal Article Pediatr Neurol · December 2024 BACKGROUND: Parents of neonates with seizures report persistent symptoms of depression, anxiety, and posttraumatic stress. We aimed to characterize the parent experience of caring for children impacted by neonatal seizures, including longitudinal assessmen ... Full text Link to item Cite

Medical Team Practices and Interpreter Alterations on Family-Centered Rounds.

Journal Article Hosp Pediatr · November 1, 2024 BACKGROUND: Robust evidence demonstrates inequities in communication during family-centered rounds for families who use a language other than English (LOE) for health care. This study aimed to characterize the type of interpreter alterations occurring on f ... Full text Link to item Cite

Perinatal palliative care in low- and middle-income countries: a scoping review.

Journal Article Ann Palliat Med · November 2024 BACKGROUND: 2.4 million neonatal deaths and 2.6 million stillbirths occur each year. Over 98% of perinatal loss occurs in low- and middle-income countries. Despite the global burden of perinatal loss, access to relevant perinatal palliative and psychosocia ... Full text Link to item Cite

Communicating with Parents About Therapeutic Hypothermia and Hypoxic Ischemic Encephalopathy: Integrating a Palliative Care Approach into Practice.

Journal Article Clin Perinatol · September 2024 Parents of newborns with hypoxic ischemic encephalopathy (HIE) can face communication challenges in the neonatal intensive care unit. Both specialty palliative care and primary palliative care trained clinicians can assist parents as they navigate traumati ... Full text Link to item Cite

Families as partners in neonatal neuro-critical care programs.

Journal Article Pediatr Res · September 2024 Parents of neonates with neurologic conditions face a specific breadth of emotional, logistical, and social challenges, including difficulties coping with prognostic uncertainty, the need to make complex medical decisions, and navigating new hopes and fear ... Full text Link to item Cite

Fetal Cerebral Ventriculomegaly: A Narrative Review and Practical Recommendations for Pediatric Neurologists.

Journal Article Pediatr Neurol · July 2024 Fetal cerebral ventriculomegaly is one of the most common fetal neurological disorders identified prenatally by neuroimaging. The challenges in the evolving landscape of conditions like fetal cerebral ventriculomegaly involve accurate diagnosis and how bes ... Full text Link to item Cite

Parent Experience of Hypoxic-Ischemic Encephalopathy and Hypothermia: A Call for Trauma Informed Care.

Journal Article Am J Perinatol · April 2024 OBJECTIVE: Therapeutic hypothermia (TH) is the standard treatment for hypoxic-ischemic encephalopathy (HIE). We surveyed parents of infants treated with TH about their experiences of communication and parental involvement in the neonatal intensive care uni ... Full text Link to item Cite

Neuroprotective therapies in the NICU in preterm infants: present and future (Neonatal Neurocritical Care Series).

Journal Article Pediatr Res · April 2024 The survival of preterm infants has steadily improved thanks to advances in perinatal and neonatal intensive clinical care. The focus is now on finding ways to improve morbidities, especially neurological outcomes. Although antenatal steroids and magnesium ... Full text Link to item Cite

Education Research: Introduction of a Standardized Communication Card to Facilitate Patient-as-Teacher Training for Medical Students in the Neurology Clerkship.

Journal Article Neurol Educ · March 2024 BACKGROUND AND OBJECTIVES: Enhanced communication has been recognized as an effective strategy to improve patient safety and care quality. While some communication skills can be taught in traditional didactic settings, learning from patient encounters is c ... Full text Link to item Cite

Promoting a neuropalliative care approach in fetal neurology.

Journal Article Semin Fetal Neonatal Med · February 2024 Full text Link to item Cite

Perinatal loss in Tanzania: Perspectives of maternal-child healthcare providers.

Journal Article PLOS Glob Public Health · 2024 Over 98% of stillbirths and neonatal deaths occur in Low- and Middle-Income Countries, such as Tanzania. Despite the profound burden of perinatal loss in these regions, access to facility or community-based palliative and psychosocial care is poor and unde ... Full text Link to item Cite

Neonatal Seizures

Chapter · January 1, 2024 Full text Cite

Prognostic Discordance Among Parents and Physicians Caring for Infants with Neurologic Conditions.

Journal Article J Pediatr · December 2023 OBJECTIVE: To determine the frequency, degree, and nature of prognostic discordance between parents and physicians caring for infants with neurologic conditions. STUDY DESIGN: In this observational cohort study, we enrolled parents and physicians caring fo ... Full text Link to item Cite

Supporting Disclosure of Unmet Mental Health Needs among Parents of Critically Ill Infants.

Journal Article J Pediatr · November 2023 OBJECTIVE: To characterize (1) the prevalence of mental health discussion and (2) facilitators of and barriers to parent disclosure of mental health needs to clinicians. STUDY DESIGN: Parents of infants with neurologic conditions in neonatal and pediatric ... Full text Link to item Cite

Neonatal brain MRI and short-term outcomes after acute provoked seizures.

Journal Article J Perinatol · November 2023 OBJECTIVE: We investigated how diagnosis and injury location on neonatal brain MRI following onset of acute provoked seizures was associated with short term outcome. STUDY DESIGN: A multicenter cohort of neonates with acute provoked seizures enrolled in th ... Full text Link to item Cite

The association of placental pathology and neurodevelopmental outcomes in patients with neonatal encephalopathy.

Journal Article Pediatr Res · November 2023 BACKGROUND: Studies conflict on how acute versus chronic placental pathology impacts outcomes after neonatal encephalopathy from presumed hypoxic-ischemic encephalopathy (HIE). We examine how outcomes after presumed HIE vary by placental pathology categori ... Full text Link to item Cite

Life on the Frontlines: Caregiver Experience of Pediatric Cerebrospinal Shunt Malfunction.

Journal Article Pediatr Neurol · October 2023 BACKGROUND: We aimed to characterize the caregiver experience in the detection and evaluation of pediatric cerebrospinal shunt malfunction. METHODS: In this descriptive qualitative study, we recruited English-speaking caregivers of children aged five years ... Full text Link to item Cite

The Role of Perinatal Palliative Care in Fetal Neurology.

Journal Article Am J Perinatol · September 2023 OBJECTIVES: Many serious or life-threatening neurologic conditions are first diagnosed during the fetal period, often following a routine ultrasound or sonographic evaluation after an abnormal aneuploidy screen. Such conditions represent a worrisome or une ... Full text Link to item Cite

More Than a Headache: Lived Experience of Migraine in Youth.

Journal Article Pediatr Neurol · September 2023 BACKGROUND: Migraine is the leading cause of disability among adolescents and young adults. We aimed to characterize the impact of migraine on the experience of children, adolescents, and caregivers. METHODS: This descriptive qualitative study recruited yo ... Full text Link to item Cite

Feeding and developmental outcomes after neonatal seizures-A prospective observational study.

Journal Article Ann Child Neurol Soc · September 2023 OBJECTIVE: Among neonates with acute symptomatic seizures, we evaluated whether inability to take full feeds at time of hospital discharge from neonatal seizure admission is associated with worse neurodevelopmental outcomes, after adjusting for relevant cl ... Full text Link to item Cite

Fetal Neurology Practice Survey: Current Practice and the Future Directions.

Journal Article Pediatr Neurol · August 2023 BACKGROUND: Fetal neurology is a rapidly evolving field. Consultations aim to diagnose, prognosticate, and coordinate prenatal and perinatal management along with other specialists and counsel expectant parents. Practice parameters and guidelines are limit ... Full text Link to item Cite

Neuromonitoring in neonatal critical care part II: extremely premature infants and critically ill neonates.

Journal Article Pediatr Res · July 2023 Neonatal intensive care has expanded from cardiorespiratory care to a holistic approach emphasizing brain health. To best understand and monitor brain function and physiology in the neonatal intensive care unit (NICU), the most commonly used tools are ampl ... Full text Link to item Cite

Neuromonitoring in neonatal critical care part I: neonatal encephalopathy and neonates with possible seizures.

Journal Article Pediatr Res · July 2023 The blooming of neonatal neurocritical care over the last decade reflects substantial advances in neuromonitoring and neuroprotection. The most commonly used brain monitoring tools in the neonatal intensive care unit (NICU) are amplitude integrated EEG (aE ... Full text Link to item Cite

Neuroprotective therapies in the NICU in term infants: present and future.

Journal Article Pediatr Res · June 2023 Outcomes of neonatal encephalopathy (NE) have improved since the widespread implementation of therapeutic hypothermia (TH) in high-resource settings. While TH for NE in term and near-term infants has proven beneficial, 30-50% of infants with moderate-to-se ... Full text Link to item Cite

Fetal Neurology Practice Survey (P10-9.001)

Conference Neurology · April 25, 2023 Full text Cite

The ALIGN Framework: A Parent-Informed Approach to Prognostic Communication for Infants With Neurologic Conditions.

Journal Article Neurology · February 21, 2023 BACKGROUND AND OBJECTIVES: Clinicians often communicate complex, uncertain, and distressing information about neurologic prognosis to parents of critically ill infants. Although communication tools have been developed in other disciplines and settings, non ... Full text Link to item Cite

Navigating prognostic communication when children with poor-prognosis cancer experience prolonged disease stability.

Journal Article Pediatr Blood Cancer · January 2023 BACKGROUND: Most pediatric patients and families want clear prognostic information across the illness course. Yet when children with poor-prognosis cancer experience prolonged disease stability, uncertainty can make communication particularly challenging. ... Full text Link to item Cite

Neonatal neuropalliative care.

Journal Article Handb Clin Neurol · 2023 Neonatal neuropalliative care is directed toward patients and families impacted by serious, life limiting, or debilitating neurologic illness in the antenatal and newborn period. This chapter will outline key considerations for clinicians hoping to provide ... Full text Link to item Cite

Symptoms of Cerebrospinal Shunt Malfunction in Young Children: A National Caregiver Survey.

Journal Article Child Neurol Open · 2023 Objective: This study aimed to describe shunt malfunction symptoms in children ≤5 years old. Results: In a national survey of 228 caregivers, vomiting (23.1%), irritability (20.8%), and sleepiness (17.2%) were the most frequent symptoms of malfunction. The ... Full text Link to item Cite

What Are Special Considerations for Perinatal Palliative Care?

Chapter · January 1, 2023 Perinatal palliative care and perinatal hospice work is a unique element of the maternal-fetal dyad and of brand-new families. These parents have rarely had relevant life experiences to prepare them for the possibility that their infant may die before or a ... Full text Cite

Seizure Burden, EEG, and Outcome in Neonates With Acute Intracranial Infections: A Prospective Multicenter Cohort Study.

Journal Article Pediatr Neurol · December 2022 BACKGROUND: Limited data exist regarding seizure burden, electroencephalogram (EEG) background, and associated outcomes in neonates with acute intracranial infections. METHODS: This secondary analysis was from a prospective, multicenter study of neonates e ... Full text Link to item Cite

Characterizing the Language Used to Discuss Death in Family Meetings for Critically Ill Infants.

Journal Article JAMA Netw Open · October 3, 2022 IMPORTANCE: Communication during conversations about death is critical; however, little is known about the language clinicians and families use to discuss death. OBJECTIVE: To characterize (1) the way death is discussed in family meetings between parents o ... Full text Link to item Cite

Prognostic Discussion for Infants with Neurologic Conditions: Qualitative Analysis of Family Conferences.

Journal Article Ann Neurol · October 2022 OBJECTIVE: We characterize the content and role of prognostic discussion for infants with neurologic conditions. METHODS: In this descriptive qualitative study, we prospectively enrolled infants (age < 1 year) in the intensive care unit with a neurologic c ... Full text Link to item Cite

Isolated and On Guard: Preparing Neonatal Intensive Care Unit Families for Life with Hydrocephalus.

Journal Article Am J Perinatol · September 2022 OBJECTIVE: This study was aimed to characterize the parent experience of caring for a child with posthemorrhagic hydrocephalus and to describe parent preferences for counseling in the neonatal period and beyond. STUDY DESIGN: This was a qualitative intervi ... Full text Link to item Cite

Role of Social Workers in Family Conferences for Critically Ill Infants.

Journal Article J Palliat Med · August 2022 Background: Communication challenges in the neonatal intensive care unit include fragmented communication, challenges managing expectations amidst uncertainty, and navigating complex medical information. Social workers are well suited to mitigate these cha ... Full text Link to item Cite

Palliative Care Consultations in Patients with Severe Traumatic Brain Injury: Who Receives Palliative Care Consultations and What Does that Mean for Utilization?

Journal Article Neurocrit Care · June 2022 BACKGROUND: Palliative care has the potential to improve goal-concordant care in severe traumatic brain injury (sTBI). Our primary objective was to illuminate the demographic profiles of patients with sTBI who receive palliative care encounters (PCEs), wit ... Full text Open Access Link to item Cite

Diagnostic preferences include discussion of etiology for adults with cerebral palsy and their caregivers.

Journal Article Dev Med Child Neurol · June 2022 AIM: To determine the views of individuals with cerebral palsy (CP) and their caregivers (CP community members) about carrying a CP diagnosis, an etiological diagnosis, or both diagnoses together. METHOD: We surveyed CP community members across two registr ... Full text Link to item Cite

Decisional Satisfaction, Regret, and Conflict Among Parents of Infants with Neurologic Conditions.

Journal Article J Pediatr · June 2022 OBJECTIVE: To characterize decisional satisfaction, regret, and conflict among parents of critically ill infants with neurologic conditions. STUDY DESIGN: In this prospective cohort study, we enrolled parents of infants with neurologic conditions in the in ... Full text Link to item Cite

Longitudinal medical needs for periviable NICU survivors.

Journal Article Early Hum Dev · June 2022 OBJECTIVE: To evaluate the technologies required, medications needed, and early intervention services utilized from discharge to 12 months post-discharge for periviable infants (22 0/7 to 24 6/7 weeks gestational age) followed in a comprehensive NICU follo ... Full text Link to item Cite

The Art of Saying Nothing.

Journal Article Pediatrics · June 1, 2022 Full text Link to item Cite

Beyond pain control: Outcome and treatment preferences in pediatric migraine.

Journal Article Headache · May 2022 OBJECTIVE: The objective of this study was to describe treatment preferences and perceived quality of existing outcome measures among children and adolescents with migraine and their caregivers. BACKGROUND: Across disciplines, there is increasing recogniti ... Full text Link to item Cite

Impact of COVID-19 Pandemic on Developmental Service Delivery in Children With a History of Neonatal Seizures.

Journal Article Pediatr Neurol · April 2022 BACKGROUND: Children with a history of acute provoked neonatal seizures are at high risk for disability, often requiring developmental services. The coronavirus disease 2019 (COVID-19) pandemic has led to widespread changes in how health care is delivered. ... Full text Link to item Cite

Assessment of parent understanding in conferences for critically ill neonates.

Conference Patient Educ Couns · March 2022 OBJECTIVES: This study aimed to characterize the use and impact of assessments of understanding in parent-clinician communication for critically ill infants. METHODS: We enrolled parents and clinicians participating in family conferences for infants with n ... Full text Link to item Cite

Characteristics of Neonates with Cardiopulmonary Disease Who Experience Seizures: A Multicenter Study.

Journal Article J Pediatr · March 2022 OBJECTIVE: To compare key seizure and outcome characteristics between neonates with and without cardiopulmonary disease. STUDY DESIGN: The Neonatal Seizure Registry is a multicenter, prospectively acquired cohort of neonates with clinical or electroencepha ... Full text Link to item Cite

US Food and Drug Administration Facilitated Pediatric Approval Programs: Application to Pediatric Neurological Disorders.

Journal Article J Child Neurol · March 2022 Crucial time is often lost while waiting for approval of therapies for pediatric neurological disorders, many of which have aggressive manifestations with devastating effects. There are logistical, ethical, and financial impediments that face the studies n ... Full text Link to item Cite

Decision Making for Infants With Neurologic Conditions.

Journal Article J Child Neurol · March 2022 Parents and clinicians caring for infants with neurologic disease often make high-stakes decisions about infant care. To characterize how these decisions occur, we enrolled infants with neurologic conditions, their parents, and their clinicians in a longit ... Full text Link to item Cite

Silence in Conversations About Advancing Pediatric Cancer.

Journal Article Front Oncol · 2022 BACKGROUND AND OBJECTIVES: Skillful use of silence by clinicians can support patient-centered communication. However, what makes a period of silence feel meaningful is not well understood. This study aimed to characterize profound, skillful silences during ... Full text Link to item Cite

Parent Mental Health and Family Coping over Two Years after the Birth of a Child with Acute Neonatal Seizures.

Journal Article Children (Basel) · December 22, 2021 Little is known about parent and family well-being after acute neonatal seizures. In thus study, we aimed to characterize parent mental health and family coping over the first two years after their child's neonatal seizures. Parents of 303 children with ac ... Full text Link to item Cite

Counseling parents of premature neonates on neuroimaging findings.

Journal Article Semin Perinatol · November 2021 While medical advancements have led to improved survival of extremely premature infants, children remain at risk for brain injury and neurodevelopmental impairment. Brain imaging can offer insight into an infant's acute and long-term outcome; however, coun ... Full text Link to item Cite

Family-Centered Care for Children and Families Impacted by Neonatal Seizures: Advice From Parents.

Journal Article Pediatr Neurol · November 2021 BACKGROUND: Parents of neonates with seizures are at risk of mental health symptoms due to the impact of illness on family life, prognostic uncertainty, and the emotional toll of hospitalization. A family-centered approach is the preferred model to mitigat ... Full text Link to item Cite

Ethical considerations in the care of encephalopathic neonates treated with therapeutic hypothermia.

Journal Article Semin Fetal Neonatal Med · October 2021 Engaging with ethical issues is central to the management of neonatal encephalopathy (NE). As treatment for these neonates evolves, new ethical issues will arise and many existing challenges will remain. We highlight three key ethical issues that arise in ... Full text Link to item Cite

Broaching goals-of-care conversations in advancing pediatric cancer.

Journal Article Pediatr Blood Cancer · October 2021 Broaching conversations about goals of care can be difficult for clinicians. Presently, the communication strategies used by pediatric oncologists to approach goals of care conversations are not well understood. We recorded disease re-evaluation conversati ... Full text Link to item Cite

Communication around palliative care principles and advance care planning between oncologists, children with advancing cancer and families.

Journal Article Br J Cancer · October 2021 BACKGROUND: In medical oncology, palliative care principles and advance care planning are often discussed later in illness, limiting time for conversations to guide goal-concordant care. In pediatric oncology, the frequency, timing and content of communica ... Full text Link to item Cite

Supporting families in their child's journey with neonatal encephalopathy and therapeutic hypothermia.

Journal Article Semin Fetal Neonatal Med · October 2021 Neonates and families face challenges in hypothermic therapy, including trauma to parents, extreme emotions, and unfamiliarity with the medical system. Communication is an essential element to supporting parents while their children are in the NICU, and be ... Full text Link to item Cite

Neuropalliative Care for Neonates.

Journal Article J Child Neurol · October 2021 Many childhood neurologic conditions are first diagnosed in the perinatal period and shorten or seriously alter the lives of affected infants. Neonatal neuropalliative care incorporates core practices and teachings of both neurology and palliative care and ... Full text Link to item Cite

Seizure Control in Neonates Undergoing Screening vs Confirmatory EEG Monitoring.

Journal Article Neurology · August 10, 2021 OBJECTIVE: To determine whether screening continuous EEG monitoring (cEEG) is associated with greater odds of treatment success for neonatal seizures. METHODS: We included term neonates with acute symptomatic seizures enrolled in the Neonatal Seizure Regis ... Full text Link to item Cite

Facilitators Associated With Building and Sustaining Therapeutic Alliance in Advanced Pediatric Cancer.

Journal Article JAMA Netw Open · August 2, 2021 IMPORTANCE: Therapeutic alliance is a core component of patient- and family-centered care, particularly in the setting of advancing cancer. Communication approaches used by pediatric oncologists to foster therapeutic alliance with children with cancer and ... Full text Link to item Cite

Early-life epilepsy after acute symptomatic neonatal seizures: A prospective multicenter study.

Journal Article Epilepsia · August 2021 OBJECTIVE: We aimed to evaluate early-life epilepsy incidence, seizure types, severity, risk factors, and treatments among survivors of acute neonatal seizures. METHODS: Neonates with acute symptomatic seizures born 7/2015-3/2018 were prospectively enrolle ... Full text Link to item Cite

Safety of Early Discontinuation of Antiseizure Medication After Acute Symptomatic Neonatal Seizures.

Journal Article JAMA Neurol · July 1, 2021 IMPORTANCE: Antiseizure medication (ASM) treatment duration for acute symptomatic neonatal seizures is variable. A randomized clinical trial of phenobarbital compared with placebo after resolution of acute symptomatic seizures closed early owing to low enr ... Full text Link to item Cite

Prognostic Communication Between Oncologists and Parents of Children With Advanced Cancer.

Journal Article Pediatrics · June 2021 BACKGROUND AND OBJECTIVES: Parents of children with cancer perceive deficits in quality of prognostic communication. How oncologists disclose information about disease progression and incurability and how prognostic communication impacts parental understan ... Full text Link to item Cite

Addressing the Social Determinants of Health During the COVID-19 Pandemic: Ensuring Equity, Quality, and Sustainability.

Journal Article Fam Community Health · April 2021 The COVID-19 pandemic has highlighted the importance of social determinants of health in affecting health outcomes. Populations with high social risk are disproportionately impacted by the virus and its economic consequences. Primary care practices have a ... Full text Link to item Cite

Characterization of Death in Infants With Neonatal Seizures.

Journal Article Pediatr Neurol · December 2020 BACKGROUND: Neonatal seizures are associated with death and neurological morbidity; however, little is known about how neonates with seizures die. METHODS: This was a prospective, observational cohort study of neonates with seizures treated at seven sites ... Full text Link to item Cite

Risk for infantile spasms after acute symptomatic neonatal seizures.

Journal Article Epilepsia · December 2020 OBJECTIVE: Infantile spasms (IS) is a severe epilepsy in early childhood. Early treatment of IS provides the best chance of seizure remission and favorable developmental outcome. We aimed to develop a prediction rule to accurately predict which neonates wi ... Full text Link to item Cite

Parent experience of caring for neonates with seizures.

Journal Article Arch Dis Child Fetal Neonatal Ed · November 2020 OBJECTIVE: Neonates with seizures have a high risk of mortality and neurological morbidity. We aimed to describe the experience of parents caring for neonates with seizures. DESIGN: This prospective, observational and multicentre (Neonatal Seizure Registry ... Full text Link to item Cite

Beyond the First Wave: Consequences of COVID-19 on High-Risk Infants and Families.

Journal Article Am J Perinatol · October 2020 The novel coronavirus disease 2019 (COVID-19) pandemic is affecting care for high-risk newborns in ways that will likely be sustained beyond the initial pandemic response. These novel challenges present an urgent imperative to understand how COVID-19 impac ... Full text Link to item Cite

Measuring Health-Related Quality of Life in Pediatric Neurology.

Journal Article J Child Neurol · September 2020 Health-related quality of life (HRQOL) is central to how clinicians and parents make choices about medical care for pediatric neurology patients. To provide parents with the information they need to make these decisions and plan for the future, it is neces ... Full text Link to item Cite

Education Research: The medical student perspective on challenging conversations.

Journal Article Neurology · August 4, 2020 OBJECTIVE: Medical students experience difficult conversations with patients during clinical clerkships. This study aimed to characterize barriers to and opportunities for learning in the setting of challenging conversations. METHODS: Neurology clerkship m ... Full text Link to item Cite

Withdrawal of Life-supporting Treatment in Severe Traumatic Brain Injury.

Journal Article JAMA Surg · August 1, 2020 IMPORTANCE: There are limited data on which factors affect the critical and complex decision to withdraw life-supporting treatment (LST) in patients with severe traumatic brain injury (sTBI). OBJECTIVE: To determine demographic and clinical factors associa ... Full text Link to item Cite

Associations between Infant and Parent Characteristics and Measures of Family Well-Being in Neonates with Seizures: A Cohort Study.

Journal Article J Pediatr · June 2020 OBJECTIVE: To characterize and determine risk factors for key dimensions of well-being at hospital discharge in families of neonates with acute symptomatic seizures. STUDY DESIGN: This prospective, observational cohort study enrolled 144 parent-infant dyad ... Full text Link to item Cite

Parent preferences for neurodevelopmental screening in the neonatal intensive care unit.

Journal Article Dev Med Child Neurol · April 2020 AIM: To determine whether, and how, neonatal intensive care unit (NICU) parents want to receive early neurodevelopmental screening information about their child's future risk of cerebral palsy and other disabilities. METHOD: This was a qualitative intervie ... Full text Link to item Cite

Opioid and benzodiazepine use during therapeutic hypothermia in encephalopathic neonates.

Journal Article J Perinatol · January 2020 OBJECTIVES: To evaluate the use of sedatives and analgesics during therapeutic hypothermia in encephalopathic neonates and assess associations between medication exposure and hospital outcomes. STUDY DESIGN: We identified neonates ≥35 weeks gestational age ... Full text Link to item Cite

Surgical decision making in the setting of severe traumatic brain injury: A survey of neurosurgeons.

Journal Article PLoS One · 2020 BACKGROUND: Surgical decision-making in severe traumatic brain injury (TBI) is complex. Neurosurgeons weigh risks and benefits of interventions that have the potential to both maximize the chance of recovery and prolong suffering. Inaccurate prognosticatio ... Full text Link to item Cite

Neurologic Outcome after Prematurity: Perspectives of Parents and Clinicians

Journal Article Obstetrical and Gynecological Survey · December 1, 2019 Full text Cite

Neurodevelopmental Risk: A Tool to Enhance Conversations With Families of Infants.

Journal Article J Child Neurol · October 2019 Parents of infants at risk of neurodevelopmental impairment require clear and individualized information about what to expect for their child, yet data suggest they have difficulty knowing how to ask for this information. Here, we pilot a Question Prompt L ... Full text Link to item Cite

Neurologic Outcome After Prematurity: Perspectives of Parents and Clinicians.

Journal Article Pediatrics · July 2019 BACKGROUND: Parents and clinicians caring for premature infants face high-stakes and time-sensitive decisions about care. We aimed to characterize how parents and clinicians discuss outcome in the context of decision-making for premature infants. METHODS: ... Full text Link to item Cite

Response to antiseizure medications in neonates with acute symptomatic seizures.

Journal Article Epilepsia · March 2019 In a prospective cohort of 534 neonates with acute symptomatic seizures, 66% had incomplete response to the initial loading dose of antiseizure medication (ASM). Treatment response did not differ by gestational age, sex, medication, or dose. The risk of in ... Full text Link to item Cite

Biallelic mutations in FDXR cause neurodegeneration associated with inflammation.

Journal Article J Hum Genet · December 2018 Mitochondrial dysfunction lies behind many neurodegenerative disorders, owing largely to the intense energy requirements of most neurons. Such mitochondrial dysfunction may work through a variety of mechanisms, from direct disruption of the electron transp ... Full text Link to item Cite

Child neurology

Chapter · October 1, 2018 Conditions impacting children with neurologic disease and their families range from congenital conditions diagnosed in the fetal period to acute brain injury in otherwise healthy teenagers. This chapter focuses on those conditions that may not have an adul ... Full text Cite

Neuropalliative care: Priorities to move the field forward.

Journal Article Neurology · July 31, 2018 Neuropalliative care is an emerging subspecialty in neurology and palliative care. On April 26, 2017, we convened a Neuropalliative Care Summit with national and international experts in the field to develop a clinical, educational, and research agenda to ... Full text Link to item Cite

No question too small: development of a question prompt list for parents of critically ill infants.

Journal Article J Perinatol · April 2018 OBJECTIVE: To develop a question prompt list tailored to the needs of parents of critically ill infants at risk of neurodevelopmental impairment. STUDY DESIGN: Question content was derived from audio-recorded neonatal intensive care unit family meetings an ... Full text Link to item Cite

Education Research: Difficult conversations in neurology: Lessons learned from medical students.

Journal Article Neurology · January 9, 2018 OBJECTIVE: To characterize features of medical student exposure to difficult conversations during a neurology core clerkship. METHODS: This was a cross-sectional concurrent nested mixed methods study, and all students rotating through a required neurology ... Full text Link to item Cite

Communicating prognosis with parents of critically ill infants: direct observation of clinician behaviors.

Journal Article J Perinatol · November 2017 OBJECTIVE: Delivering prognostic information to families requires clinicians to forecast an infant's illness course and future. We lack robust empirical data about how prognosis is shared and how that affects clinician-family concordance regarding infant o ... Full text Link to item Cite

Risk tolerance and attitudes toward chemotherapy: Who chooses palliative treatment when cure is possible?

Conference Journal of Clinical Oncology · May 20, 2017 10054 Background: Many patients with acute myeloid leukemia (AML) face a difficult choice about whether to receive palliative chemotherapy or high-dose, potentially-curative chemotherapy that poses a risk of early death. How peop ... Full text Cite

Parent Experience of Neonatal Encephalopathy.

Journal Article J Child Neurol · March 2017 We aimed to characterize the parent experience of caring for an infant with neonatal encephalopathy. In this mixed-methods study, we performed semistructured interviews with parents whose infants were enrolled in an existing longitudinal cohort study of th ... Full text Link to item Cite

Characterization of Death in Neonatal Encephalopathy in the Hypothermia Era.

Journal Article J Child Neurol · March 2017 This study aimed to characterize the circumstances of death in encephalopathic neonates treated with therapeutic hypothermia. Patients who died after or during treatment with therapeutic hypothermia between 2007-2014 were identified. Patient circumstance o ... Full text Link to item Cite

In Reply.

Journal Article Obstet Gynecol · February 2017 Full text Link to item Cite

Diffusion Tensor Imaging Detects Occult Cerebellar Injury in Severe Neonatal Hypoxic-Ischemic Encephalopathy.

Journal Article Dev Neurosci · 2017 BACKGROUND: Despite the benefits of whole-body hypothermia therapy, many infants with hypoxic-ischemic encephalopathy (HIE) die or have significant long-term neurodevelopmental impairment. Prospectively identifying neonates at risk of poor outcome is essen ... Full text Link to item Cite

Should Neonatologists Give Opinions Withdrawing Life-sustaining Treatment?

Journal Article Pediatrics · December 2016 An infant has a massive intracranial hemorrhage. She is neurologically devastated and ventilator-dependent. The prognosis for pulmonary or neurologic recovery is bleak. The physicians and parents face a choice: withdraw the ventilator and allow her to die ... Full text Link to item Cite

Who chooses palliative chemotherapy when a cure is possible? Results of a risk tolerance survey of laypersons.

Conference Journal of Clinical Oncology · October 9, 2016 35 Background: Many patients with acute myeloid leukemia (AML) face a difficult choice about whether to receive palliative chemotherapy or high-dose, potentially-curative chemotherapy that poses a risk of early death. How people ... Full text Cite

Distinguishing Arterial Ischemic Stroke From Hypoxic-Ischemic Encephalopathy in the Neonate at Birth.

Journal Article Obstet Gynecol · October 2016 OBJECTIVE: To identify perinatal risk factors that can distinguish arterial ischemic stroke from hypoxic-ischemic encephalopathy at birth. METHODS: This is a cohort study of all neonates born at 35 weeks of gestation or greater admitted to our neonatal int ... Full text Link to item Cite

Communication Challenges in Neonatal Encephalopathy.

Journal Article Pediatrics · September 2016 BACKGROUND: Families must process complex information related to neonatal encephalopathy and therapeutic hypothermia. METHODS: In this mixed methods study, semi-structured interviews were performed with parents whose infants were enrolled in an existing lo ... Full text Link to item Cite

Palliative care in neonatal neurology: robust support for infants, families and clinicians.

Journal Article J Perinatol · May 2016 Infants with neurological injury and their families face unique challenges in the neonatal intensive care unit. As specialty palliative care support becomes increasingly available, we must consider how to intentionally incorporate palliative care principle ... Full text Link to item Cite

Fetal and maternal manifestations of tuberous sclerosis complex: Value of fetal MRI.

Journal Article Neuroradiol J · February 2016 Tuberous sclerosis complex (TSC) is a genetic disorder characterized by benign hamartomas in various organ systems of the body. Prenatal screening of fetuses of mothers affected with TSC using ultrasonography (US) may detect cardiac lesions. Fetal US is no ... Full text Link to item Cite

Clinical and neuroimaging features as diagnostic guides in neonatal neurology diseases with cerebellar involvement.

Journal Article Cerebellum Ataxias · 2016 Cerebellar abnormalities are encountered in a high number of neurological diseases that present in the neonatal period. These disorders can be categorized broadly as inherited (e.g. malformations, inborn errors of metabolism) or acquired (e.g. hemorrhages, ... Full text Link to item Cite

Genotype-phenotype correlation of congenital anomalies in multiple congenital anomalies hypotonia seizures syndrome (MCAHS1)/PIGN-related epilepsy.

Journal Article Am J Med Genet A · January 2016 Mutations in PIGN, resulting in multiple congenital anomalies-hypotonia-seizures syndrome, a glycosylphosphatidylinositol anchor deficiency, have been published in four families to date. We report four patients from three unrelated families with epilepsy a ... Full text Link to item Cite

Acute paraplegia in a preterm infant with cerebral sinovenous thrombosis.

Journal Article J Perinatol · June 2015 We report the case of a 1-month old, 28-week gestational age infant who presented with acute paraplegia after cardiopulmonary arrest. Later imaging confirms cerebral sinovenous thrombosis (CSVT) and a suspected infarction in the conus medullaris of the spi ... Full text Link to item Cite

Efficacy of Glutamate Modulators in Tic Suppression: A Double-Blind, Randomized Control Trial of D-serine and Riluzole in Tourette Syndrome.

Journal Article Pediatr Neurol · June 2015 BACKGROUND: It has been hypothesized that glutamatergic transmission may be altered in Tourette syndrome. In this study, we explored the efficacy of a glutamate agonist (D-serine) and antagonist (riluzole) as tic-suppressing agents in children with Tourett ... Full text Link to item Cite

New treatment options for lennox-gastaut syndrome

Journal Article Current Treatment Options in Neurology · August 1, 2013 Opinion statement: Lennox-Gastaut syndrome (LGS) is one of the most difficult epilepsy syndromes to treat, and many children are refractory to standard treatment regimens. Valproic acid, topiramate, and lamotrigine are considered first-line therapies. Newe ... Full text Cite

Efficacy of the ketogenic diet in Lennox-Gastaut syndrome: a retrospective review of one institution's experience and summary of the literature.

Journal Article Developmental medicine and child neurology · May 2012 AimTo determine the efficacy of the ketogenic diet for children with Lennox-Gastaut syndrome (LGS) at our institution and in the literature.MethodThe records of children with LGS initiated on the ketogenic diet at our institution from 199 ... Full text Cite

Risperidone use in autism spectrum disorders: a retrospective review of a clinic-referred patient population.

Journal Article J Child Neurol · April 2011 Risperidone is widely used in children with autism spectrum disorders for behavioral modification. In this study, the authors aimed to (1) describe a clinic-referred sample of patients with an autism spectrum disorder on risperidone, (2) identify differenc ... Full text Link to item Cite