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Neonatal palliative

Joseph Sacco, Rebecca Virata
The discontinuation of life sustaining medical treatment (LSMT) in severely and permanently impaired neonates, especially artificial nutrition and hydration (ANH) is subject to uncertainty and controversy. Definitive clinical guidelines are lacking, clinical research is limited, ethical disagreement is commonplace, and while case and statutory law provide legal underpinning for the practice in defined circumstances, uncertainty in this realm likely influences clinical practice. We use the case of a neurologically devastated neonate to highlight and review these arenas, and show how, using available legal, ethical, and clinical standards and practice, the case of Baby O was resolved, and to underline the need for further research in neonatal palliative care...
October 11, 2016: American Journal of Hospice & Palliative Care
Bui Quoc Thang, Tatsuya Furugaki, Motoo Osaka, Yutaka Watanabe, Shinya Kanemoto, Fuminaga Suetsugu, Yuji Hiramatsu
PURPOSE: There is less certainty regarding the best strategy for treating neonates with functional single ventricle (SV) and hypoplastic aortic arch. We have applied a modified extended aortic arch anastomosis (EAAA) and main pulmonary artery banding (PAB) as an initial palliation in neonates with transverse arch hypoplasia and assessed the mid-term outcomes. METHODS: In total, 10 neonates with functional SV and extensive hypoplasia or interruption of the arch underwent a modified EAAA (extended arch anastomosis with a subclavian flap) concomitant with main PAB through a thoracotomy without cardiopulmonary bypass...
October 11, 2016: Annals of Thoracic and Cardiovascular Surgery
Min-Seok Kim, Hong-Gook Lim, Woong Han Kim, Jeong Ryul Lee, Yong Jin Kim
BACKGROUND AND OBJECTIVES: The aim of the study is to evaluate the long-term results after a surgical repair of Ebstein's anomaly. SUBJECTS AND METHODS: Forty-eight patients with Ebstein's anomaly who underwent open heart surgery between 1982 and 2013 were included. Median age at operation was 5.6 years (1 day-42.1 years). Forty-five patients (93.7%) demonstrated tricuspid valve (TV) regurgitation of less than moderate degree. When the patients were divided according to Carpentier's classification, types A, B, C, and D were 11, 21, 12, and 4 patients, respectively...
September 2016: Korean Circulation Journal
Carlos M Mery, R Michael Nieto, Luis E De León, Shaine A Morris, Wei Zhang, John L Colquitt, Iki Adachi, Lauren C Kane, Jeffrey S Heinle, E Dean McKenzie, Charles D Fraser
BACKGROUND: Predictors for single ventricle palliation (SVP) or successful biventricular repair (BVR) in patients with borderline left-side heart structures are not well defined. The goal was to evaluate the role of echocardiography and intracardiac exploration in determining feasibility of BVR. METHODS: All neonates surgically treated from 1995 to 2015 with mitral valve (MV), aortic valve, or left ventricle end-diastolic dimension z score of -2 or less for whom management was controversial were included...
October 4, 2016: Annals of Thoracic Surgery
Deborah Gilmour, Mark W Davies, Anthony R Herbert
AIM: End-of-life care remains part of the scope of practice in all neonatal units. This study aimed to characterise the end-of-life care provided in an Australian tertiary neonatal centre, where paediatric palliative care was accessible via a consultative service. METHODS: This retrospective cohort study examined indicators of quality palliative care provided to 46 infants born within a 30-month period. The cohort included four infants who received palliative care consultations additional to usual neonatal care...
October 4, 2016: Journal of Paediatrics and Child Health
Diego A Lara, Mary K Ethen, Mark A Canfield, Wendy N Nembhard, Shaine A Morris
BACKGROUND: Hypoplastic left heart syndrome (HLHS) is strongly associated with Turner syndrome (TS); outcome data when these conditions coexist is sparse. We aimed to investigate long-term survival and causes of death in this population. METHODS: The Texas Birth Defects Registry was queried for all live born infants with HLHS during 1999-2007. We used Kaplan-Meier and Cox regression analyses to compare survival among patients with HLHS with TS (HLHS/TS+) to patients who had HLHS without genetic disorders or extracardiac birth defects (HLHS/TS-)...
September 29, 2016: Congenital Heart Disease
Melanie J Cozad, Lisa C Lindley, Sandy J Mixer
The use of agency nurses offers flexibility in filling registered nurse (RN) openings during times of shortage, yet little is known about their use in specialized palliative care. In an effort to fill this knowledge gap, this study determined whether significant relationships existed between full-time and part-time RN vacancies and the use of agency RNs within specialized hospices that deliver perinatal end-of-life care to women and their families in the event of miscarriage, ectopic pregnancy, or other neonatal complications resulting in death...
September 27, 2016: Policy, Politics & Nursing Practice
Travis J Wilder, Brian W McCrindle, Edward J Hickey, Gerhard Ziemer, Christo I Tchervenkov, Marshall L Jacobs, Peter J Gruber, Eugene H Blackstone, William G Williams, William M DeCampli, Christopher A Caldarone, Christian Pizarro
BACKGROUND: For neonates with critical left ventricular outflow tract obstruction (LVOTO), hybrid procedures are an alternative to the Norwood stage 1 procedure. Despite perceived advantages, however, outcomes are not well defined. Therefore, we compared outcomes after stage 1 hybrid and Norwood procedures. METHODS: In a critical LVOTO inception cohort (2005-2014; 20 institutions), a total of 564 neonates underwent stage 1 palliation with the Norwood operation with a modified Blalock-Taussig shunt (NW-BT; n = 232; 41%), Norwood operation with a right ventricle-to-pulmonary artery conduit (NW-RVPA; n = 222; 39%), or a hybrid procedure (n = 110; 20%)...
August 31, 2016: Journal of Thoracic and Cardiovascular Surgery
Chloe Shaw, Elizabeth Stokoe, Katie Gallagher, Narendra Aladangady, Neil Marlow
The article analyses the decision-making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care at the end of life. Thirty one families were recruited from a neonatal intensive care unit in England and their formal interactions with the doctor recorded. The conversations were transcribed and analysed using conversation analysis. Analysis focused on sequences in which decisions about the redirection of care were initiated and progressed...
September 25, 2016: Sociology of Health & Illness
Stephanie Kukora, Nathan Gollehon, Naomi Laventhal
BACKGROUND: Some pregnant patients with complex fetal anomalies meet with paediatric palliative care subspecialists prior to delivery, but referral to antenatal palliative care consultation (APCC) is not standard. Little is known about its role in perinatal decision-making. METHODS: A single-centre retrospective cohort study was undertaken for patients referred for outpatient antenatal counselling by a neonatologist over a two-and-half-year period. Patients also receiving APCC were compared with infants with similar prognoses who did not...
September 16, 2016: Archives of Disease in Childhood. Fetal and Neonatal Edition
J Downing, R Kiman, S Boucher, B Nkosi, B Steel, C Marston, E Lascar, J Marston
The International Children's Palliative Care Network held its second international conference on children's palliative care in Buenos Aires, Argentina, from the 18th-21st May 2016. The theme of the conference was 'Children's Palliative Care…. Now!' emphasising the need for palliative care for children now, as the future will be too late for many of them. Six pre-conference workshops were held, addressing issues connected to pain assessment and management, adolescent palliative care, ethics and decision-making, developing programmes, the basics of children's palliative care, and hidden aspects of children's palliative care...
2016: Ecancermedicalscience
Adam Wheeler, Dan Vu, Pierangelo Renella
We present a case of an ex-30 week premature male infant diagnosed postnatally with Tetralogy of Fallot, hemitruncus, and discontinuous pulmonary arteries (PAs) at 6 days of life. The patient was diagnosed by echocardiography, and the diagnosis was confirmed on subsequent dual-energy chest CT angiogram. In our patient, the left PA arose directly from the aorta, whereas the right PA originated normally from the right ventricular outflow tract. At 9 days of life, he underwent successful surgical palliation with placement of a modified Blalock-Taussig (aortopulmonary) shunt from the base of the left subclavian artery to the anomalously connected left PA along with anastomosis together of the right and left branch PAs to establish continuity with the main PA...
September 2016: Radiology case reports
Bahaaldin Alsoufi, Courtney McCracken, Subhadra Shashidharan, Brian Kogon, William Border, Kirk Kanter
BACKGROUND: The two most common surgical strategies for the treatment of neonates born with single-ventricle anomalies associated with aortic arch obstruction are the Norwood operation and pulmonary artery banding plus coarctation repair (PAB+COA). We reviewed characteristics and outcomes of neonates who underwent those two surgical strategies at our institution. METHODS: Between 2002 and 2012, 94 neonates with a single ventricle and aortic arch obstruction (excluding hypoplastic left heart syndrome) underwent Norwood (n = 65) or PAB+COA (n = 29)...
September 1, 2016: Annals of Thoracic Surgery
Miguel Urencio, Ali Dodge-Khatami, Chris E Greenleaf, Giorgio Aru, Jorge D Salazar
For repair of interrupted aortic arch, unfavorable anatomy challenges a tension-free anastomosis. We describe a useful alternative surgical technique used in five neonates/infants, involving splitting the ascending aorta from the sinotubular junction to the arch origin, leftward and posterior "sliding" of the flap with anastomosis to the distal arch creating a native tissue bridge, and reconstruction with a patch. With wide interruption gaps between proximal and distal aortic portions, the ascending aortic slide is a safe and reproducible technique, providing a tension-free native tissue bridge with potential for growth, and a scaffold for patch augmentation in biventricular hearts, or for Norwood stage I in univentricular palliation...
September 2016: World Journal for Pediatric & Congenital Heart Surgery
Bahaaldin Alsoufi, Scott Gillespie, William T Mahle, Shriprasad Deshpande, Brian Kogon, Kevin Maher, Kirk Kanter
Significant noncardiac and genetic abnormalities (NC and GA) are common in neonates with congenital heart defects. We sought to examine current-era effect of those abnormalities on early and late outcomes following cardiac surgery. The method from 2002-2012, 1538 neonates underwent repair (n = 860, 56%) or palliation (n = 678, 44%) of congenital heart defects. Regression models examined the effect of NC and GA on operative results, resource utilization, and late outcomes. Neonates with NC and GA (n = 312, 20%) had higher incidence of prematurity (21% vs 13%; P < 0...
2016: Seminars in Thoracic and Cardiovascular Surgery
Lianne M Geerdink, Gideon J du Marchie Sarvaas, Irene M Kuipers, Willem A Helbing, Tammo Delhaas, Henriette Ter Heide, Lieke Rozendaal, Chris L de Korte, Sandeep K Singh, Tjark Ebels, Mark G Hazekamp, Felix Haas, Ad J J C Bogers, Livia Kapusta
OBJECTIVE: Surgical outcomes of pediatric patients with Ebstein's anomaly are often described as part of all-age-inclusive series. Our objective is to focus on patients treated surgically in childhood (0-18 y). We study the intended treatment (biventricular or 1.5 ventricle repair or univentricular palliation), freedom from unplanned reoperation and survival of this specific age group, in a nationwide study. DESIGN: Records of all Ebstein's anomaly patients born between 1980 and 2013 were reviewed...
August 25, 2016: Congenital Heart Disease
Narges L Horriat, Sara L Deatsman, Jessica Stelter, Peter C Frommelt, Garick D Hill
Initial surgical strategies in neonates with single left ventricular (LV) anatomy vary based on adequacy of pulmonary and systemic blood flow. Differing myocardial responses to these strategies, as reflected in indices of systolic function, ventricular size, and mass have not been well defined. We sought to evaluate single LV myocardial response to varied physiology and initial palliation and determine whether the response is consistent and predictable. Infants with single LV physiology were divided based on neonatal palliation: no palliation/PA band (NO); BT shunt only (BT); or Norwood procedure (NP)...
August 23, 2016: Pediatric Cardiology
Annie Janvier, Barbara Farlow, Keith J Barrington
Trisomy 13 and 18 are life-limiting conditions for which a palliative approach is frequently recommended. The objective of this study was to examine parental goals/decisions, the length of life of their child and factors associated with survival. Parents of children who lived with trisomy 13 or 18 that were part of English-speaking social networks were invited to participate in a questionnaire study. Participants answered questions about their hopes/goals, decisions regarding neonatal interventions, and the duration of their children's lives...
September 2016: American Journal of Medical Genetics. Part C, Seminars in Medical Genetics
Jumana Khan, Sian Gaze, Stephen Tomlin
AIM: To explore what involvement pharmacists in the UK have in paediatric palliative care OBJECTIVES: 1. To determine the current roles and services provided by pharmacists to paediatric palliative care patients.2. To establish how other members of the multidisciplinary team perceive the pharmacist's role and the extent to which they value the pharmacist's contributions.3. To identify the references used by the multidisciplinary team to make clinical decisions about medication use in paediatric palliative care patients...
September 2016: Archives of Disease in Childhood
Xavier Durrmeyer, Claire Scholer-Lascourrèges, Laurence Boujenah, Pierre Bétrémieux, Olivier Claris, Micheline Garel, Monique Kaminski, Laurence Foix-L'Helias, Laurence Caeymaex
OBJECTIVE: Many extremely preterm neonates die in the delivery room (DR) after decisions to withhold or withdraw life-sustaining treatments or after failed resuscitation. Specific palliative care is then recommended but sparse data exist about the actual management of these dying babies. The objective of this study was to describe the clinical course and management of neonates born between 22 and 26 weeks of gestation who died in the DR in France. DESIGN, SETTING, PATIENTS: Prospective study including neonates, who were liveborn between 22(+0) and 26(+6) weeks of gestation and died in the DR in 2011, among infants included in the EPIPAGE-2 study at the 18 centres participating in this substudy of extremely preterm neonates...
August 16, 2016: Archives of Disease in Childhood. Fetal and Neonatal Edition
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