It is extremely rare to give birth at this stage of pregnancy, (less than 2 in a 1000 births are born in the UK at 22 or 23 weeks of pregnancy [MBRRACE-UK - UK Perinatal Mortality Surveillance for 2015]. While we know that some babies born at this stage of pregnancy do survive, here we have only talked to parents whose baby died before, during or very shortly after birth. We wanted to talk to parents who experienced the loss of a baby between 20 and 24 weeks of pregnancy because we knew that they fall in between those parents who experience early pregnancy losses and those who experience stillbirth. The death of a baby that is born alive and dies shortly after birth at any stage of pregnancy is referred to by health professionals as a neonatal death. These babies will have their birth and death officially registered whatever stage of pregnancy they are born at. Babies born showing no signs of life before 24 weeks of gestation cannot by law be officially registered as a stillbirth and are referred to as a miscarriage. These babies do not have their birth or death officially registered. We spoke to parents whose baby was born alive and those who were born showing no signs of life so that we could explore similarities and differences in their experiences.
We have done our best with the terminology that we have used by talking to parents, charity representatives and health professionals. The parents we spoke to felt very strongly that the word miscarriage did not describe the lived experience of losing a baby at this stage of pregnancy. However we understand that the terminology we have used may or may not fit with all parents’ views of how to describe their experience.
This is a summary of independent research funded by a National Institute for Health Research (NIHR) Career Development Fellowship award to Lucy Smith (Reference NIHR CDF-2013-06-018 Smith). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.