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Neonatal palliative care

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https://www.readbyqxmd.com/read/29129740/survey-on-neonatal-end-of-life-comfort-care-guidelines-across-america
#1
Shelly Haug, Sara Farooqi, Christopher G Wilson, Andrew Hopper, Grace Oei, Brian Carter
CONTEXT: Infants of age < 1 year have the highest mortality rate in pediatrics. The American Academy of Pediatrics (AAP) published guidelines for palliative care in 2013, however, significant variation persists among local protocols addressing neonatal comfort care at the end-of-life (EOL). OBJECTIVES: The purpose of this study was to evaluate current neonatal EOL comfort care practices and clinician satisfaction across America METHODS: After Institutional Review Board approval (516005), an anonymous, electronic survey was sent to members of the AAP Section on Neonatal-Perinatal Medicine...
November 9, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/29128922/causes-of-renal-oligohydramnios-impact-on-prenatal-counseling-and-postnatal-outcome
#2
EDITORIAL
Sebastian Loos, Markus J Kemper
The presence of renal oligohydramnios (ROH) in a fetus has been associated in the past with a poor prognosis for survival, although recent studies have shown that survival has improved considerably due to the advances in neonatology and pediatric nephrology. In an article recently published in Pediatric Nephrology, evaluation of a large series by Mehler and colleagues confirms the improved prognosis, showing a survival rate of 32 of 38 (84%). In addition, only 12 of 35 (34%) neonates required renal replacement therapy...
November 11, 2017: Pediatric Nephrology: Journal of the International Pediatric Nephrology Association
https://www.readbyqxmd.com/read/29121791/unexpected-survivors-children-with-life-limiting-conditions-of-uncertain-prognosis
#3
Savithri Nageswaran, Anna Hurst, Andrea Radulovic
OBJECTIVE: Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of children with life-limiting illnesses who survived longer than the expectations of health-care providers. STUDY DESIGN: This is a retrospective cohort study conducted in a tertiary-care children's hospital in North Carolina...
January 1, 2017: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/29118890/a-novel-technique-for-the-administration-of-sub-ambient-oxygen-in-the-operating-room
#4
Asad A Khawaja, Marco Corridore, Joseph D Tobias
Hypoplastic left heart syndrome (HLHS) is a common form of congenital heart disease with abnormal development of left-sided structures of the heart. As excessive pulmonary blood flow is common prior to palliative surgical procedures, therapeutic maneuvers may be required to decrease pulmonary blood flow and augment systemic cardiac output. Respiratory manipulations to optimize the ratio of pulmonary to systemic blood flow may include techniques to induce hypercarbia or the delivery of sub-ambient concentrations of oxygen (FiO2 less than 0...
October 2017: Cardiology Research
https://www.readbyqxmd.com/read/29075889/prenatal-parental-decision-making-and-postnatal-outcome-in-renal-oligohydramnios
#5
Katrin Mehler, Ingo Gottschalk, Kathrin Burgmaier, Ruth Volland, Anja K Büscher, Markus Feldkötter, Titus Keller, Lutz T Weber, Angela Kribs, Sandra Habbig
BACKGROUND: Previous studies on renal oligohydramnios (ROH) report highly variable outcome and identify early onset of ROH and presence of extrarenal manifestations as predictors of adverse outcome in most cases. Data on termination of pregnancy (TOP) and associated parental decision-making processes are mostly missing, but context-sensitive for the interpretation of these findings. We provide here a comprehensive analysis on the diagnosis, prenatal decision-making and postnatal clinical course in all pregnancies with ROH at our medical centre over an 8-year period...
October 27, 2017: Pediatric Nephrology: Journal of the International Pediatric Nephrology Association
https://www.readbyqxmd.com/read/29057694/early-unexpected-diagnosis-of-fetal-life-limiting-malformation-antenatal-palliative-care-and-parental-decision
#6
Federico Mariona, Marianne Burnett, Melody Zoma, Janice Blake, Hanna Khouri
INTRODUCTION: Conjoined twins are an infrequent occurrence in obstetric practice. Live-conjoined twins on a late preterm triplet pregnancy is an even rarer event. OBJECTIVE: The objective of this study is to emphasize the critical importance of perinatal palliative care and non-directive parental counseling, informed decision making and respect for autonomy following full disclosure of findings, fetal life-limiting diagnosis, treatment alternatives, maternal-fetal potential complications, and most likely perinatal outcomes...
November 2, 2017: Journal of Maternal-fetal & Neonatal Medicine
https://www.readbyqxmd.com/read/28977325/analysis-of-death-and-palliative-care-in-a-neonatal-intensive-care-unit
#7
Ligia Marçola, Silvia Maria Macedo de Barbosa, Ivete Zoboli, Rita Tiziana Verardo Polastrini, Maria Esther Jurfest Ceccon
OBJECTIVE: To characterize cases of children admitted to the Neonatal Intensive Care Unit of a tertiary university hospital who died in the period ranging from January 01, 2012 to July 31, 2014, and who required palliative care and/or were subjected to it. METHODS: A retrospective descriptive study was carried out by reviewing the medical records of these patients to collect data and to perform descriptive statistical analysis. RESULTS: During the study period, 49 children died after at least 48 hours from the time of admission...
April 2017: Revista Paulista de Pediatria: Orgão Oficial da Sociedade de Pediatria de São Paulo
https://www.readbyqxmd.com/read/28916237/ethics-and-palliative-care-in-the-perinatal-world
#8
REVIEW
Colleen M Marty, Brian S Carter
The perinatal world is unique in its dutiful consideration of two patients along the lines of decision-making and clinical management - the fetus and the pregnant woman. The potentiality of the fetus-newborn is intertwined with the absolute considerations for the woman as autonomous patient. From prenatal diagnostics, which may be quite extensive, to potential interventions prenatally, postnatal resuscitation, and neonatal management, the fetus and newborn may be anticipated to survive with or without special needs and technology, to have a questionable or guarded prognosis, or to live only minutes to hours...
September 13, 2017: Seminars in Fetal & Neonatal Medicine
https://www.readbyqxmd.com/read/28807643/-use-of-subcutaneous-route-for-comfort-care%C3%A2-in-neonatal-palliative-population-systematic-review-and-survey-of-practices-in-france
#9
N Pouvreau, J Tandonnet, O Tandonnet, L Renesme
INTRODUCTION: Subcutaneous hydration (hypodermoclysis) and drug administration is a widely used method of analgesic therapy in adult palliative care medicine. Very little is known about its use in neonatal medicine. Evidence-based guidelines do not exist due to a lack of data. In this study, the advantages of subcutaneous analgesic therapy in terms of comfort in neonatal palliative care situations were investigated. METHODS: This report details the results of a systematic review associated with a survey in neonatal intensive care units (NICUs) and pediatric palliative care departments (PPCTs) in France...
September 2017: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
https://www.readbyqxmd.com/read/28802248/utility-of-rapid-whole-exome-sequencing-in-the-diagnosis-of-neonatal-niemann-pick-disease-type-c-presenting-with-fetal-hydrops-and-liver-failure
#10
Mersedeh Rohanizadegan, Sarah M Abdo, Anne O'Donnell-Luria, Ivana Mihalek, Peggy Chen, Marilyn Sanders, Kristen Leeman, Megan Cho, Christina Hung, Olaf Bodamer
Rapid whole exome sequencing (rWES) is increasingly used in critically ill newborn infants to inform about diagnosis, clinical management and prognosis. Here we report a male newborn infant with hydrops, pancytopenia and acute liver failure who was listed for liver transplantation. Given the acuity of the presentation, the procedure related morbidity and mortality and lack of diagnosis we employed rWES in the proband and both parents with a turn-around time of 10 business days. rWES returned one maternally inherited, likely pathogenic and one paternally inherited, likely pathogenic variant in NPC1 suggestive of a diagnosis of Niemann Pick disease type C (NPC)...
August 11, 2017: Cold Spring Harbor Molecular Case Studies
https://www.readbyqxmd.com/read/28790278/-perioperative-care-for-patients-with-hypoplastic-left-heart-syndrome
#11
Yujiro Ide, Kisaburo Sakamoto
Hypoplastic Left Heart Syndrome (HLHS) is one of the most challenging congenital heart defects which require surgical interventions during neonatal period. In normal risk cohort, its surgical outcome has been improved dramatically since Dr. William Norwood reported the 1st successful case more than 30 years ago. The introduction of routine bilateral pulmonary artery banding with subsequent Norwood operation during early infantile( we call it as "rapid 2 stage Norwood operation") has brought an earlier hemodynamic stabilization after Norwood operation...
July 2017: Kyobu Geka. the Japanese Journal of Thoracic Surgery
https://www.readbyqxmd.com/read/28777689/the-role-of-pediatric-palliative-care-in-complex-congenital-heart-disease-three-illustrative-cases
#12
Rachna May, Jess Thompson
BACKGROUND: Although the role of pediatric palliative care (PPC) is well described in oncology, neonatal, and pediatric intensive care patients, the involvement of PPC in patients with congenital heart disease (CHD) is not well explored. CHD is a leading cause of neonatal morbidity and can cause ongoing morbidity throughout the course of a child's life. PPC, with its focus on quality of life and longitudinal care through the course of an illness, could be of benefit to this population...
November 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28758538/-you-can-only-give-warmth-to-your-baby-when-it-s-too-late-parents-bonding-with-their-extremely-preterm-and-dying-child
#13
Andrea Abraham, Manya J Hendriks
This study on end-of-life decisions in extremely preterm babies shows that the parents under study experience a multitude of stressors due to the immediate separation after birth, the alienating setting of the neonatal intensive care unit (NICU), the physical distance to the child, medical uncertainties, and upcoming decisions. Even though they are considered to be parents (assigned parenthood), they cannot act as primary caregivers. Instead, they depend on professional instructions for access and care. Embodied parenthood can be experienced only at the end-of-life, that is, during the dying trajectory and after the child's death...
July 1, 2017: Qualitative Health Research
https://www.readbyqxmd.com/read/28711963/transfer-of-neonates-with-critical-congenital-heart-disease-within-a-regionalized-network
#14
Michael F Swartz, Jill M Cholette, Jennifer M Orie, Marshall L Jacobs, Jeffrey P Jacobs, George M Alfieris
Regionalization of pediatric cardiac surgical care varies between and within states. In most geographic regions, at least some neonates with critical heart disease are transferred from their birth hospital to a different hospital for surgery. The impact of neonatal transfer for surgery, particularly over a considerable distance (>10 miles), has been largely unexplored. We sought to examine the impact of transferring neonates for cardiac surgery. We queried the New York State Cardiac Surgery database (2005-2014) from a single institution to identify neonates born within the cardiac surgery center and those transferred for surgery...
July 15, 2017: Pediatric Cardiology
https://www.readbyqxmd.com/read/28695444/severe-fetal-abnormality-and-outcomes-of-continued-pregnancies-a-french-multicenter-retrospective-study
#15
Marine Bourdens, Julie Tadonnet, Laura Hostalery, Laurent Renesme, Barthélémy Tosello
Objectives To describe a population choosing to continue with their pregnancy despite being eligible to receive a medical termination of pregnancy (TOP). Methods Nine-year retrospective study of data (01/01/2006 to 31/12/2014) from three French prenatal diagnostic centers describing the perinatal outcomes of these pregnancies. Pregnancies were classified according to etiology and severity of its fetal pathology. Several perinatal parameters were described: maternal characteristics, parental prenatal choices and information on the pregnancy and neonatal outcomes...
October 2017: Maternal and Child Health Journal
https://www.readbyqxmd.com/read/28667041/placental-fetal-thrombotic-vasculopathy-occurring-in-association-with-megacystis-microcolon-intestinal-hypoperistalsis-syndrome-a-case-report
#16
Anneliese Vélez-Pérez, Pamela Younes, Nina Tatevian
Megacystis-microcolon-intestinal hypoperistalsis syndrome (MMIHS) is a rare disease of functional obstruction affecting the bladder and intestines, characterized by a markedly distended bladder, microcolon, and decreased or absent intestinal peristalsis. Afflicted neonates have very poor prognosis, usually with fatal outcomes in first days to months of life. Placental fetal thrombotic vasculopathy (FTV) is a thrombo-occlusive disorder of the chorionic plate and fetal circulation. Herein, we describe an undocumented association of MMIHS and placental FTV...
May 2017: Annals of Clinical and Laboratory Science
https://www.readbyqxmd.com/read/28490381/palliative-care-in-the-neonatal-unit-neonatal-nursing-staff-perceptions-of-facilitators-and-barriers-in-a-regional-tertiary-nursery
#17
Meegan Kilcullen, Susan Ireland
BACKGROUND: Neonatology has made significant advances in the last 30 years. Despite the advances in treatments, not all neonates survive and a palliative care model is required within the neonatal context. Previous research has focused on the barriers of palliative care provision. A holistic approach to enhancing palliative care provision should include identifying both facilitators and barriers. A strengths-based approach would allow barriers to be addressed while also enhancing facilitators...
May 11, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28476218/-bioethics-in-end-of-life-decisions-in-neonatology-unresolved-issues
#18
Juan Arnaez, Juan Carlos Tejedor, Sonia Caserío, María Teresa Montes, María Teresa Moral, Javier González de Dios, Alfredo García-Alix
This document is the result of previous work carried out by different expert groups and submitted to multidisciplinary debate at a Conference about controversial, deficient, or new aspects in the field of neonatal palliative care, such as: 1) the deliberative decision-making process, 2) hospital and domiciliary palliative care, 3) donation after controlled cardiac death, and 4) moral stress in professionals. The most relevant conclusions were: the need to instruct professionals in bioethics and in the deliberative method to facilitate thorough and reasonable decision-making; the lack of development in the field of perinatal palliative care and domiciliary palliative care in hospitals that attend newborns; the need to provide neonatal units with resources that help train professionals in communication skills and in the management of moral distress, as well as delineate operational procedure and guidelines for neonatal organ donation...
May 2, 2017: Anales de Pediatría: Publicación Oficial de la Asociación Española de Pediatría (A.E.P.)
https://www.readbyqxmd.com/read/28466610/neonatal-cardiac-surgery-in-the-new-era-lessons-learned-from-1000-consecutive-cases
#19
Gabriel Amir, Georgy Frenkel, Elchanan Bruckheimer, Alexander Lowenthal, Amichay Rotstein, Jacob Katz, Yelena Zeitlin, Ofer Schiller, Einat Birk
BACKGROUND: neonatal cardiac surgery has evolved over the last 50 years with a large percentage of the patients achieving complete physiological repair in the neonatal period. The remaining patients achieve staged palliation with an increasing amount of success. OBJECTIVES: To report our experience with 1000 neonatal cardiac surgical procedures performed in the last 10 years. METHODS: We conducted a retrospective analysis of surgical outcome in all neonatal patients who underwent cardiac surgery between January 2007 and July 2016 at Schneider Children's Medical Center of Israel...
November 2016: Israel Medical Association Journal: IMAJ
https://www.readbyqxmd.com/read/28416424/-first-requests-for-a-regional-pediatric-palliative-care-team-a-prospective-and-observational-study
#20
L Marty, F Bernard, M Pierre, S Bringuier-Branchereau, N Sirvent, A Ribrault
INTRODUCTION: In France, 26 regional pediatric palliative care teams (ERRSPP) were created between 2008 and 2012. We conducted the first prospective French study to describe the main specifications of the initial contact with an ERRSPP and to analyze the responses given. DESIGN AND METHODS: All the requests for interventions on the part of the ERRSPP were collected between September 2013 and September 2014. We prospectively completed a questionnaire on the patient's clinical and demographic data (age, sex, disease), details regarding the request (type of applicant, unit's specialty, request pattern), and the answers provided (interval between diagnosis and request, duration of care by ERRSPP, death, changes compared to the initial request)...
April 14, 2017: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
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