Vécu de parents ayant perdu un jumeau en réanimation néonatale : étude qualitative, 3 ans après le décès

Abstract

The mortality rate both before and after birth is higher in twins. Parents face a particularly difficult mourning experience when confronted with the loss of 1 of their newborn twins. The aim of this article is to describe how parents experience and cope with this situation over the long term, how they describe the loss at the time of the death in a neonatal intensive care unit (NICU), the way they are able to become attached to the surviving twin, and the role that NICU caregivers can play to help them. This study is part of a larger qualitative study on parental mourning after the loss of a newborn in 4 NICUs in France. Semi-structured research interviews were conducted 3years after the death. The interviews were recorded, transcribed, and anonymized. Discourse analysis was used to extract the data on different themes. Among the 166 participating parents, 26 had lost a newborn twin. The parents reported their difficulties when faced with simultaneous contradictory events at the time of the death of a twin child in the NICU. Mourning appeared to be more difficult in this particular case: to combine the loss of a deceased child with the care of the surviving newborn was very complicated. The existence of the "co-twin" was described as an essential support for the parents; however, over the long term, this child could not fulfill the feelings of emptiness. The relation with this surviving child was sometimes disturbed by parental anxiety that the accident could recur. Fathers and mothers showed repression of their sadness and despair. The representations of the 2 children in their parents' mind were sometimes very close or even overlapping and some parents were confused with regards to the place each of them could have. In the NICU, the caregivers should be able to listen to the parents expressing their contradictory feelings, to sustain the acknowledgement of the loss of 1 child, and in becoming attached to the surviving child. Parents need to be reassured about their living child's health. When faced with the loss of a newborn twin, parents are overwhelmed by the coexistence of contradictory feelings. The role of the medical staff is essential in building separate stories and having different memories for each child.