Babies born showing no signs of life before 24 weeks of gestation cannot by law be officially registered as a stillbirth (for more information see Overview) and are referred to as a miscarriage. The effects of this legal limit impacted on parents in both practical and emotional ways. The parents that we spoke to felt extremely strongly that the word ‘miscarriage’ was completely inappropriate and did not in any way describe their lived experience. The reality of losing a baby after 20 weeks was very different to what they imagined, or had experienced, an earlier miscarriage as being. They reflected on the pain of labour and giving birth to a ‘formed, tiny, perfect’ baby which felt more than a miscarriage. Many parents had held their baby in their arms, sung to them, washed and dressed them and had a funeral for them. Maxine felt very strongly that ‘we’ve gone through everything that you would for a normal baby’.
Many of the parents we spoke to were treated as if they were having a baby not a miscarriage by hospital staff caring for them. They really appreciated this level of care. Sarah felt ‘it was nice that they were treating him as a baby, a child that we had lost, rather than a miscarriage and I think these are all the kind of things that made a massive difference to how we dealt with it afterwards.’ Some mothers talked about how using the term ‘miscarriage’ had failed to prepare them for the experience of going through labour, giving birth, seeing and spending time with their baby . Camille felt it would have helped if ‘instead of using that horrible word ‘miscarriage’, they should have said ‘you’re about to have a baby”.
Parents felt losing a baby at any stage of pregnancy was devastating but that more consideration should be given to the impact of losing a baby so close to the 24 weeks cut off when the death would be considered a stillbirth and legally registered. Some parents we spoke to had experienced a miscarriage early in a different pregnancy and then also lost a baby between 20 and 24 weeks, and felt the ‘trauma was a lot different’. While extremely upset by their experiences of loss in early pregnancy, feeling a baby move or seeing them on an ultrasound scan and then giving birth to a formed baby rather than heavy bleeding made the experience very different. Some parents also felt that there should not be different rules based on whether or not a baby shows signs of life. Kelly felt that knowing that some babies who are born at 22 and 23 weeks of pregnancy survive made the word miscarriage even harder to accept, ‘I’ve heard of babies surviving at twenty three weeks… I just can’t understand why they use that terminology.’
Parents talked about how using the word ‘miscarriage’ to refer to their loss made them feel as if they were ‘making a mountain out of a molehill’ and that it prevented friends and family fully understanding what they had been through. David felt that calling the loss of his baby a miscarriage meant that a lot of people couldn’t ‘read between the lines and experience the pain’ he and his wife Elaine were feeling.
Babies born before 24 weeks of pregnancy showing no signs of life do not have their birth and death officially registered. Many parents found this very difficult, as if their baby’s life was not counted or validated.
Many parents we spoke to found it extremely difficult when their baby was born so near to the legal definition of a stillbirth (24 weeks of pregnancy). Their babies were born a matter of a few weeks, days or even hours before the official time. While parents recognised the need to have some sort of legal cut-off they felt that the definition should be rethought. Nesta’s baby was born at 23 weeks and 6 days, she found it very strange to find out about the threshold, ‘if there’s a baby and there’s a coffin, then there’s a person, but at the same time there’s a reason there has to be a threshold’. Michelle said people needed to realise ‘how painful it is to get so close to that line, and not get to that line and actually offer some sort of support and practical help on that.’ However whatever legal cut-off is used, there will be hurt for those who feel they and their babies are excluded from registration.
As well as the emotional impact of being born showing no signs of life before this 24 week limit, there were also practical implications. Being this wrong side of the limit had a major impact on parents access to maternity and paternity pay and parental leave as well as other financial aid. Sarah found it ‘was really rubbing salt in the wound’ when she had to go back and pay for dental treatment that she was no longer exempt from because she lost her baby before 24 weeks of pregnancy.