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Neonatal palliative

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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
#1
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...
August 11, 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
#2
Mersedeh Rohanizadegan, Sarah El-Almery, 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
#3
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/28783102/the-pulmonary-circulation-in-the-single-ventricle-patient
#4
REVIEW
Amanda Hauck, Nicolas Porta, Steven Lestrud, Stuart Berger
In recent decades, survival of children with complex congenital heart disease has improved considerably. Specifically, children with a variety of congenital heart defects resulting in 'single ventricle' physiology can now undergo palliative surgery that allows survival beyond the neonatal period, and in many cases into adulthood, despite having a single functional ventricular pumping chamber supplying both the pulmonary and systemic circulation. Our growing understanding of the functionally univentricular heart has resulted in freedom from Fontan failure of >50% at 25 years post-Fontan...
August 7, 2017: Children
https://www.readbyqxmd.com/read/28777689/the-role-of-pediatric-palliative-care-in-complex-congenital-heart-disease-three-illustrative-cases
#5
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...
August 4, 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
#6
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/28736841/outcomes-of-blalock-taussig-shunts-in-current-era-a-single-center-experience
#7
Navaneetha Sasikumar, Antony Hermuzi, Chun-Po Steve Fan, Kyong-Jin Lee, Rajiv Chaturvedi, Edward Hickey, Osami Honjo, Glen S Van Arsdell, Christopher A Caldarone, Arnav Agarwal, Lee Benson
OBJECTIVES: Mortality associated with the modified Blalock-Taussig shunt (MBTS) remains high despite advanced perioperative management. This study was formulated to provide data on (1) current indications, (2) outcomes, and (3) factors affecting mortality and morbidity. DESIGN: A retrospective single center chart review identified 95 children (excluding hypoplastic left heart lesions) requiring a MBTS. Mortality and major morbidity were analyzed using the Kaplan Meier method and risk factor analysis using Cox's proportional hazard regression...
July 24, 2017: Congenital Heart Disease
https://www.readbyqxmd.com/read/28711967/fate-of-duct-dependent-discontinuous-pulmonary-arteries-after-arterial-duct-stenting
#8
Giuseppe Santoro, Giovanbattista Capozzi, Mario Giordano, Gianpiero Gaio, Maria Teresa Palladino, Carola Iacono, Heba Talat Mahmoud, Maria Giovanna Russo
Significant and balanced PA growth following arterial duct (AD) stenting has already been consistently reported in literature. However, to date, no data are available about the role of this approach as palliation of congenital heart disease with a duct-dependent discontinuous pulmonary artery (dPA). The aim of this study was to evaluate the fate of a dPA of ductal origin following trans-catheter AD stabilization. Angiographic PA evaluation was performed in seven patients submitted to neonatal AD stenting as palliative recruitment of dPA...
July 15, 2017: Pediatric Cardiology
https://www.readbyqxmd.com/read/28711963/transfer-of-neonates-with-critical-congenital-heart-disease-within-a-regionalized-network
#9
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/28709664/current-results-of-single-ventricle-palliation-of-patients-with-double-inlet-left-ventricle
#10
Bahaaldin Alsoufi, Courtney McCracken, Kirk Kanter, Subhadra Shashidharan, Brian Kogon
BACKGROUND: Double inlet left ventricle (DILV) is a heterogeneous single ventricle anomaly in which initial presentation, and consequently, timing and palliation mode vary based on morphology and degree of pulmonary or systemic outflow obstruction. Very few reports, mostly old, focused on palliation outcomes of DILV. We report current-era results and examine whether morphologic and subsequently surgical factors influence survival. METHODS: Fifty-eight infants with DILV underwent single ventricle palliation...
July 11, 2017: Annals of Thoracic Surgery
https://www.readbyqxmd.com/read/28695444/severe-fetal-abnormality-and-outcomes-of-continued-pregnancies-a-french-multicenter-retrospective-study
#11
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...
July 10, 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
#12
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/28666664/young-infants-with-severe-tetralogy-of-fallot-early-primary-surgery-versus-transcatheter-palliation
#13
Travis J Wilder, Glen S Van Arsdell, Lee Benson, Eric Pham-Hung, Michael Gritti, Alexandra Page, Christopher A Caldarone, Edward J Hickey
BACKGROUND: Infants with severe tetralogy of Fallot may undergo (1) early primary surgical repair (EARLY) or (2) early transcatheter palliation (CATH) before delayed surgical repair. We compared these strategies with (3) elective single-stage tetralogy of Fallot repair (IDEAL). METHODS: From 2000 to 2012, 453 children underwent tetralogy of Fallot repair (excluding systemic-pulmonary shunts), including 383 in the IDEAL (75%), 42 in the EARLY (9%), and 28 in the CATH (6%) groups...
May 19, 2017: Journal of Thoracic and Cardiovascular Surgery
https://www.readbyqxmd.com/read/28660303/the-role-of-eeg-recordings-in-children-undergoing-cardiac-surgery-for-congenital-heart-disease
#14
Sascha Meyer, Martin Poryo, Mohammed Shatat, Ludwig Gortner, Hashim Abdul-Khaliq
BACKGROUND: Neurological dysfunction may occur after corrective cardiac surgery using cardio-pulmonary bypass (CPB) with or without circulatory arrest. Different neurophysiological monitoring systems have been employed to detect neurological complications and possible brain injury in infants and children during and after cardiac surgery. The value of Elecetroencephalogram (EEG) in infants and children at risk for neurological sequelae has not been systematically studied. METHODS: Sequential performance of two EEGs before and after cardiac surgery at a tertiary University Hospital to screen for possible brain injury after cardiac surgery in neonates and children undergoing CPB surgery...
June 28, 2017: Wiener Medizinische Wochenschrift
https://www.readbyqxmd.com/read/28610465/successful-truncal-valve-replacement-with-a-mechanical-valve-after-bilateral-pulmonary-artery-banding
#15
Shuichi Yoshitake, Yukihiro Kaneko, Kazuki Yakuwa, Ikuya Achiwa
Surgical management of truncus arteriosus, or common arterial trunk, has expanded over the past three decades to include earlier surgical intervention, initially during infancy and now chiefly in the neonatal period. Many studies have shown that preoperative truncal valve insufficiency is an independent risk factor for mortality. We herein present the case of a five-month-old boy with severe truncal valve insufficiency who underwent repair of common arterial trunk and prosthetic replacement of the truncal valve with associated annular enlargement after initial stabilization in the newborn period via palliative bilateral pulmonary artery banding...
January 1, 2017: World Journal for Pediatric & Congenital Heart Surgery
https://www.readbyqxmd.com/read/28600095/adult-congenital-interventions-in-heart-failure
#16
REVIEW
Hussam S Suradi, Ziyad M Hijazi
Congenital heart disease (CHD) is the most common birth defect, occurring in approximately 0.8% to 1.0% of neonates. Advances in medical and surgical therapies for children with CHD have resulted in a growing population of patients reaching adulthood, with survival rates exceeding 85%. Many of these patients, especially if managed inappropriately, face the prospect of future complications including heart failure and premature death. For adults with uncorrected or previously palliated CHD, percutaneous therapies have become the primary treatment for many forms of CHD...
July 2017: Interventional cardiology clinics
https://www.readbyqxmd.com/read/28599970/cerebral-near-infrared-spectroscopy-insensitively-detects-low-cerebral-venous-oxygen-saturations-after-stage-1-palliation
#17
Erin Rescoe, Xiaoqi Tang, Dorothy Alison Perry, Lynn A Sleeper, James A DiNardo, Barry D Kussman, John N Kheir
BACKGROUND: Measurement of cerebral venous oxyhemoglobin saturation (ScvO2) is considered a gold standard in assessing the adequacy of tissue oxygen delivery (DO2) after the stage 1 palliation (S1P), with SvO2 <30% often representing severely compromised DO2. Regional oxygenation index (rSO2) based on near-infrared resonance spectroscopy (NIRS) frequently is used to screen for compromised DO2, although its sensitivity to detect severe abnormalities in SvO2 is uncertain. METHODS: ScvO2 was measured by co-oximetry from the internal jugular vein as clinically indicated in 73 neonates after S1P...
September 2017: Journal of Thoracic and Cardiovascular Surgery
https://www.readbyqxmd.com/read/28555538/comparison-of-self-expandable-and-balloon-expanding-stents-for-hybrid-ductal-stenting-in-hypoplastic-left-heart-complex
#18
Sebastian Goreczny, Shakeel A Qureshi, Eric Rosenthal, Thomas Krasemann, Mohamed S Nassar, David R Anderson, Gareth J Morgan
OBJECTIVES: We aimed to compare the procedural and mid-term performance of a specifically designed self-expanding stent with balloon-expandable stents in patients undergoing hybrid palliation for hypoplastic left heart syndrome and its variants. BACKGROUND: The lack of specifically designed stents has led to off-label use of coronary, biliary, or peripheral stents in the neonatal ductus arteriosus. Recently, a self-expanding stent, specifically designed for use in hypoplastic left heart syndrome, has become available...
July 2017: Cardiology in the Young
https://www.readbyqxmd.com/read/28520542/hybrid-palliation-for-interrupted-aortic-arch-with-small-aortic-valve
#19
Yoshimasa Uno, Ayumu Masuoka, Kentarou Hotoda, Toshiyuki Katogi, Takaaki Suzuki
OBJECTIVES: Open heart surgery for interrupted aortic arch in the neonatal period is still a high-risk procedure related in part to patient factors such as low birth weight, other morphologic anomalies, and, especially, small aortic valve size. Recently, we performed hybrid palliation with bilateral pulmonary artery banding and ductal stenting as the first-stage palliation for such cases. In this study, the outcomes of this procedure were examined. METHODS: Six cases of interrupted aortic arch with a small aortic valve underwent the hybrid procedure in the neonatal period in our institute from 2010 to 2015 (mean age: 6...
May 2017: World Journal for Pediatric & Congenital Heart Surgery
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
#20
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
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