Barthélémy Tosello

Barriers in Referring Neonatal Patients to Perinatal Palliative Care: A French Multicenter Survey

Background When an incurable fetal condition is detected, some women (or couples) would rather choose to continue with the pregnancy than opt for termination of pregnancy for medical reasons, which, in France, can be performed until full term. Such situations are frequently occurring and sometimes leading to the implementation of neonatal palliative care. The objectives of this study were to evaluate the practices of perinatal care french professionals in this context; to identify the potential obstacles that might interfere with the provision of an appropiate neonatal palliative care; and, from an opposite perspective, to determine the criteria that led, in some cases, to offer this type of care for prenatally diagnosed lethal abnormality. Methods We used an email survey sent to 434 maternal-fetal medicine specialists (MFMs) and fetal care pediatric specialists (FCPs) at 48 multidisciplinary centers for prenatal diagnosis (MCPD). Results Forty-two multidisciplinary centers for prenatal diagnosis (87.5%) took part. In total, 102 MFMs and 112 FCPs completed the survey, yielding response rate of 49.3%. One quarter of professionals (26.2%) estimated that over 20% of fetal pathologies presenting in MCPD could correspond to a diagnosis categorized as lethal (FCPs versus MFMs: 24% vs 17.2%, p = 0.04). The mean proportion of fetal abnormalities eligible for palliative care at birth was estimated at 19.30% (± 2.4) (FCPs versus MFMs: 23.4% vs 15.2%, p = 0.029). The degree of diagnostic certainty appears to be the most influencing factor (98.1%, n = 207) in the information provided to the pregnant woman with regard to potential neonatal palliative care. The vast majority of professionals, 92.5%, supported considering the practice of palliative care as a regular option to propose antenatally. Conclusions Our study reveals the clear need for training perinatal professionals in perinatal palliative care and for the standardization of practices in this field.

Projets de naissance en soins palliatifs : un domaine de la périnatalité à construire

Some couples may choose to continue the pregnancy unable to decide for termination of pregnancy. Such situations recently occurred in neonatology units and may lead to neonatal palliative care. Faced with all uncertainties inherent to medicine and the future of the baby, medical teams must inform parents of different possible outcome step by step. Consistency in the reflection and intentionality of the care is essential among all different stakeholders within the same health team to facilitate support of parents up to a possible fatal outcome. This issue in perinatal medicine seems to be to explore how caregivers can contribute in the construction of parenthood in a context of a palliative care birth plan.

Projets de naissance en soins palliatifs: un domaine de la périnatalité à construire [Palliative care birth plan: A field of perinatal medicine to build].

Some couples may choose to continue the pregnancy unable to decide for termination of pregnancy. Such situations recently occurred in neonatology units and may lead to neonatal palliative care. Faced with all uncertainties inherent to medicine and the future of the baby, medical teams must inform parents of different possible outcome step by step. Consistency in the reflection and intentionality of the care is essential among all different stakeholders within the same health team to facilitate support of parents up to a possible fatal outcome. This issue in perinatal medicine seems to be to explore how caregivers can contribute in the construction of parenthood in a context of a palliative care birth plan.

Lethal fetal abnormalities: how to approach perinatal palliative care?

Abstract Objective: Some of the antenatally diagnosed fetal pathologies are unlikely to get compatible with life. Still some women choose to continue with pregnancy. Subsequently, perinatal palliative care (PPC) has become a constructive demarche in such situations. Our study, based on a multicentric survey, reports some cases of fetal pathologies considered as lethal according to perinatal professionals and reveals the decisional process in each case. Methods: We sent by emails a questionnaire to 434 maternal–fetal medicine specialists and fetal care pediatric specialists at 48 multidisciplinary centers for prenatal diagnosis. Results: The participation rate was 49.3%. In total, 61 obstetric–gynecologists and 68 neonatologists completed the survey. The results showed that 35.4% of the pregnant women asked for the continuation of pregnancy and 24.7% asked for the termination of pregnancy. More than half of professionals (52.9%) took the initiative of informing women about the options for birth support (including PPC), while 32.7% of obstetric gynecologists did not take this initiative versus 10.2% of neonatologists (p  < 0.01). Conclusion: This study demonstrates the absolute need to provide PPC training for professionals and to standardize its practices.

Short and medium-term outcomes of live-born twins after fetoscopic laser therapy for twin-twin transfusion syndromea

Abstract Objective: To evaluate short and medium term outcomes of children born of monochorionic pregnancies complicated by twin-twin transfusion syndrome treated by fetoscopic laser surgery. Methods: This was a retrospective observational study performed between May 2007 and 2012. Neonatal data was from 45 patients under 5 years of age. The prospective observational study was of the neurologic outcome of these children using the Ages and Stages Questionnaire (ASQ), 2nd edition, French version, at up to 5 years of age. Results: Neurologic assessment at discharge from maternity unit was normal for 41 infants (93.2%). Logistic regression suggested that the risk of neurosensory sequelae was significantly related to the status of donor [odds ratio=4.62 (1.18; 18.0)] and significantly preterm birth <32 weeks of gestation [odds ratio=5.50 (1.38; 21.9)]. Eleven questionnaires were considered abnormal (31.1%). Two children presented a severe neurologic abnormality (5.7%). There was no significant correlation between any area of the questionnaire and status at birth (donor or recipient). Conclusions: The data from our cohort, particularly as regards neurologic outcome, were satisfactory and concordant with previously published results. The use of the ASQ as a screening tool for neurologic outcome in children is original, which allowed in our cohort to highlight early neurological disorders.

Hemidiaphragmatic paralysis in preterm neonates: a rare complication of peripherally inserted central catheter extravasation

Unilateral diaphragmatic paralysis was diagnosed in 2 preterm neonates born at 29 and 25 weeks of gestation, respectively. In both instances, the pathophysiology was phrenic nerve injury after extravasation of parenteral nutrition fluid. Misplacement and infection were predisposing factors. Diaphragmatic movement analysis by time-motion-mode ultrasonography was helpful in achieving a diagnosis. The first neonate required a diaphragmatic placation, whereas the other infant was managed nonoperatively. These cases confirm a rare etiology of diaphragmatic paralysis and possible spontaneous recovery. In neonates with very low birth weight, general anesthesia and thoracic surgery may be associated with a high morbidity, suggesting that nonoperative medical treatment, when possible, is preferable if the neonate does not require supplemental oxygen.

Severe Fetal Abnormality and Outcomes of Continued Pregnancies: A French Multicenter Retrospective Study

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. These parameters were classified in function of the severity of fetal pathology according to the classification proposed by Dommergues et al. (Prenatal Diagnosis 30(6):531–539, 2010) Results Overall, 155 pregnancies were continued; 140 have been included in our study. Pregnancy outcomes consisted of four TOPs (2.9%); 20 in utero deaths (14.3%); 110 live births (78.6%) of which 55.4% were still alive at 2 years old as the most recent information; and 6 (4.2%) with unknown outcomes. In 27 cases, perinatal palliative care was requested (an increase of 37% over 9 years). 36.4% of cases were classified as having a high mortality risk; 19.3% with a severe handicap risk; 11.4% with a risk of isolated intellectual disability; and 32.9% with an uncertain prognosis. The parental decisions to choose perinatal palliative care were significantly higher within the high mortality risk group as compared to other severity groups (p < 0.001); this group also had a significantly higher mortality (p < 0.001), with a survival rate of 26.3%. Conclusion Over the study period, in France, there was an increase in continued pregnancies, despite a diagnosis of severe fetal pathology in France. Therefore, it is essential that perinatal professionals are provided with a palliative care framework and training in their approach for this population which is heterogeneous in terms of etiology.

Management and outcome challenges in newborns with gastroschisis: A 6-year retrospective French study.

Abstract Objective: To identify the gestational age (GA) at which risk of mortality and severe outcome was minimized comparing preterm delivery and expectant management. Methods: Retrospective study performed between 2009 and 2014 of newborns with gastroschisis in three large French level III neonatal intensive care units. Each department followed two distinct strategies: elective delivery at 35 weeks’ GA and a delayed approach. Results: We included 69 gastroschisis cases. The lengths of stay lasting more than 60 days were significantly greater in the planned delivery group than in the expectant approach group (18/30 (60%) vs. 8/39 (20.5%), p = 0.001). Gastroschisis cases receiving antenatal corticoids during the last two weeks of gestation required significantly less surgeries during their initial stay (p = 0.003) as well as shorter parenteral feedings (p = 0.002). A multivariate logistic regression showed that a GA of less than 36 weeks’ GA was is a pejorative factor for a stay above 60 days, regardless of whether it was a simple or complex gastroschisis, (OR= 3.8; p = 0.021). A complex gastroschisis was a risk factor for significantly longer parenteral feedings, regardless of the center where patient is treated (Beta = −0.3, p = 0.035). Conclusions: Future research should focus on decisions about delivery timing by incorporating risk of neonatal morbidity.

Analgesic Effect of Maternal Human Milk Odor on Premature Neonates: A Randomized Controlled Trial

Background: Two studies have demonstrated an analgesic effect of maternal milk odor in preterm neonates, without specifying the method of olfactory stimulation. Research aim: This study aimed to assess the analgesic effect of maternal milk odor in preterm neonates by using a standardized method of olfactory stimulation. Methods: This trial was prospective, randomized, controlled, double blinded, and centrally administered. The inclusion criteria for breastfed infants included being born between 30 and 36 weeks + 6 days gestational age and being less than 10 days postnatal age. There were two groups: (a) A maternal milk odor group underwent a venipuncture with a diffuser emitting their own mother’s milk odor and (2) a control group underwent a venipuncture with an odorless diffuser. The primary outcome was the Premature Infant Pain Profile (PIPP) score, with secondary outcomes being the French scale of neonatal pain—Douleur Aiguë du Nouveau-né (DAN) scale—and crying duration. All neonates were given a dummy. Results: Our study included 16 neonates in the maternal milk odor group and 17 in the control group. Neonates exposed to their own mother’s milk odor had a significantly lower median PIPP score during venipuncture compared with the control group (6.3 [interquartile range (IQR) = 5-10] versus 12.0 [IQR = 7-13], p = .03). There was no significant difference between the DAN scores in the two groups (p = .06). Maternal milk odor significantly reduced crying duration after venipuncture (0 [IQR = 0-0] versus 0 [IQR = 0-18], p = .04). Conclusion: Maternal milk odor has an analgesic effect on preterm neonates.

Neurodevelopment and Health-Related Quality of Life in Infants Born with Gastroschisis: A 6-Year Retrospective French Study.

Introduction Quantify quality of life (QoL) outcomes in gastroschisis children is little assessed. The primary objective was to describe the long‐term outcome of newborns with gastroschisis treated in three tertiary care hospitals of France in terms of neurodevelopment and QoL. Materials and Methods The study reported was a cross‐sectional, descriptive multicentric retrospective study assessing the outcome of newborns with gastroschisis, born between January 1, 2009, and December 31, 2014, treated at two large and French level III neonatal intensive care units. Long‐term outcome data were assessed by questionnaires sent to the infants’ parents. Questionnaires explored global health, neurological development, and quality of life (overall assessment including socio‐economic and medical), Age & Stages Questionnaire, infants’ quality of life (KIDSCREEN), and quality of parents’ life (General Questionnaire Short Form‐36). Results In this study, 50% of the survivors families answered the assessment form (n = 33). The average follow‐up age was 40 months, ranging from 8 months to 6 years. Cases of simple gastroschisis more often had a normal score for “communication” (p = 0.033), while patients who received morphine for a longer duration had significantly lower scores for the items “communication” and “problem resolving” (p = 0.024 and p = 0.011, respectively). Childrens QoL was significantly lower for patients with gestational age younger than 36 weeks (p = 0.023) and for patients born following “fetal cause delivery” (p = 0.022). Parents had a significantly higher physical composite score if their child underwent primary closure (p = 0.012). Conclusion Our analyses confirm the idea that cases of complex gastroschisis and preterm delivery may lead to poorer outcome. Such hindsight (40 months in mean) allowed for an interesting assessment of development long after the patients initial hospitalization and to confirm these results, a standardized neuropsychological evaluation of patients should be done when at least 6 years old. An accurate assessment of the social environment and its impact on the development and QoL of children will be fundamental to avoid selection bias.