Living with a Crucial Decision: A Qualitative Study of Parental Narratives Three Years after the Loss of Their Newborn in the NICU

BACKGROUND: The importance of involving parents in the end-of-life decision-making-process (EOL DMP) for their child in the neonatal intensive care unit (NICU) is recognised by ethical guidelines in numerous countries. However, studies exploring parents' opinions on the type of involvement report conflicting results. This study sought to explore parents' experience of the EOL DMP for their child in the NICU. METHODS: The study used a retrospective longitudinal design with a qualitative analysis of parental experience 3 years after the death of their child in four NICUs in France. 53 face-to-face interviews and 80 telephone interviews were conducted with 164 individuals. Semi-structured interviews were conducted to explore how parents perceived their role in the decision process, what they valued about physicians' attitudes in this situation and whether their long-term emotional well being varied according to their perceived role in the EOL DMP. FINDINGS: Qualitative analysis identified four types of perceived role in the DMP: shared, medical, informed parental decision, and no decision. Shared DM was the most appreciated by parents. Medical DM was experienced as positive only when it was associated with communication. Informed parental DM was associated with feelings of anxiousness and abandonment. The physicians' attitudes that were perceived as helpful in the long term were explicit sharing of responsibility, clear expression of staff preferences, and respectful care and language toward the child. INTERPRETATION: Parents find it valuable to express their opinion in the EOL DMP of their child. Nonetheless, they do need continuous emotional support and an explicit share of the responsibility for the decision. As involvement preferences and associated feelings can vary, parents should be able to decide what role they want to play. However, our study suggests that fully autonomous decisions should be misadvised in these types of tragic choices

[Retro-tracheal left pulmonary artery]

The authors report the cases of two neonates with retro-tracheal left pulmonary arteries (pulmonary artery sling). In the first case, there was rapid onset of cardiac failure with signs of airway compression. Echocardiography showed the vascular anomaly associated with a large ventricular septal defect (VSD). After standard radiological investigation and bronchoscopy to exclude an associated tracheo-bronchial malformation, the VSD was repaired surgically with reimplantation of the left pulmonary artery. Unfortunately, the patient died of major airways obstruction in the postoperative period. Autopsy showed tracheo-bronchial anomalies which had not been diagnosed preoperatively. The second patient presented with hypoventilation of the right lung. After echocar-diographic diagnosis of the anomaly, a thorough investigation (thoracic CT, helicoidal scan, bronchoscopy) was carried out and no associated bronchial malformations were observed. Reimplantation of the left pulmonary artery was successful and the postoperative course was uneventful. Retro-tracheal left pulmonary artery is a rare malformation which is difficult to diagnose. It requires extensive pulmonary investigations and a multi-disciplinary The prognosis is poor when there are associated tracheo-bronchial malformations

Emotional responses of parents participating for the first time in caregiving for their baby in a neonatal unit.

Parents of term and preterm infants hospitalised at birth experience a stressful situation. They are considered as primary caregivers in neonatal units and are encouraged to participate in their child's care. The aim of our study was to analyse the feelings of parents participating for the first time in caregiving for their baby admitted at birth in a neonatal unit in France and to compare the feelings reported by parents of term and preterm infants. An online survey was created in 2014 for parents who had a baby hospitalised at birth. We analysed parents' responses to this open-ended question: "How did you feel when you participated in caregiving for your baby for the first time?" using a qualitative discourse analysis by two analysts. Themes were identified and coded. Between February 2014 and March 2018, 1603 parents of preterm infants and 239 parents of term infants responded to this open-ended question. Twenty-five per cent of parents expressed positive feelings exclusively (confidence, ease, joy, pride, feeling supported by healthcare professionals, by their family and feeling of being a parent), 41% expressed negative feelings exclusively (stress, fear, feeling of being judged, frustration, anger, uselessness and clumsiness) and 34% expressed mixed feelings (both positive and negative). Parents of term infants expressed less frequent feelings of stress and fear than parents of preterm infants: with a relative risk (RR) of 0.69, 95% confidence interval (CI) 0.56, 0.87. Parents of term babies more frequently expressed feelings of frustration: RR 2.40 (95% CI 1.33, 4.32). Infant- and Family-Centred Developmental Care supportive programmes are recommended within neonatal units in order to improve the experience of parents participating in caregiving for their baby hospitalised at birth

Artère pulmonaire gauche rétro-trachéale. A propos de 2 cas.

The authors report the cases of two neonates with retro-tracheal left pulmonary arteries (pulmonary artery sling). In the first case, there was rapid onset of cardiac failure with signs of airway compression. Echocardiography showed the vascular anomaly associated with a large ventricular septal defect (VSD). After standard radiological investigation and bronchoscopy to exclude an associated tracheo-bronchial malformation, the VSD was repaired surgically with reimplantation of the left pulmonary artery. Unfortunately, the patient died of major airways obstruction in the postoperative period. Autopsy showed tracheo-bronchial anomalies which had not been diagnosed preoperatively. The second patient presented with hypoventilation of the right lung. After echocardiographic diagnosis of the anomaly, a thorough investigation (thoracic CT, helicoidal scan, bronchoscopy) was carried out and no associated bronchial malformations were observed. Reimplantation of the left pulmonary artery was successful and the postoperative course was uneventful. Retro-tracheal left pulmonary artery is a rare malformation Which is difficult to diagnose. It requires extensive pulmonary investigations and a multi-disciplinary approach. The prognosis is poor when there are associated tracheo-bronchial malformations

French Neonatal Society issues recommendations on preventing nasal injuries in preterm newborn infants during non-invasive respiratory support.

To issue practical recommendations regarding the optimal care of nasal skin when non-invasive ventilation support is used. We performed a systematic search of PubMed to identify relevant papers published in English or French through December 2019. Different grades of evidence were evaluated. Forty-eight eligible studies. The incidence in preterm infants was high. The lesions were more frequent for preterm infants born under 30 weeks of gestational age and/or below 1500 g. The lesion was most often located on the skin of the nose but could also be found on the intranasal mucous membranes or elsewhere on the face. Nasal injuries appear early after the beginning of non-invasive ventilation at a mean of 2-3 days for cutaneous lesions and eight or nine for intranasal lesions. The most effective strategies to prevent trauma are the use of a hydrocolloid at the beginning of the support ventilation, the preferential use of a mask and the rotation of ventilation interfaces. Nasal injuries with continuous positive airway pressure treatment in preterm newborn infants were frequent and can induce pain, discomfort and sequelae. The immature skin of preterm newborn infants needs specific attention from trained caregivers and awareness by parents

Perception des parents de leur participation aux soins de leur enfant dans les unités de néonatologie en France [Parental perception of their involvement in the care of their children in French neonatal units].

Groupe de réflexion et d’évaluation sur l’environnement du nouveau-né de la Société française de néonatologie : A. Allen, A. Brandicourt, M.-A. Duboz, C. Fichtner, L.Girard, F. Gonnaud, D. Haumont, P. Hüppi, S. Isaia, N. Knezovic, S. Legouais, F. Mons, V. Pelofy, J.-C. Picaud, V. Pierrat, L. Renesme, J. Sizun, G. Souet, G. Thiriez, P.Truffert, C. Zaoui, C. ZoresThe experience of becoming the parent of a sick or premature newborn can be particularly distressing for parents. They often encounter challenges to the development of their parenting roles. Perception of the hospital stay has never been analyzed on a large scale