Experiences when extremely premature birth is likely
Most of these women’s pregnancies had progressed well in the early stages, so premature labour came as a shock. Lindsay remembered feeling fine until after her 20 week scan. But others, such as Courtney and Asun, had experienced extreme sickness throughout their pregnancy. Sudden symptoms
When mothers started to experience symptoms varied widely. For some, the symptoms came on very suddenly and they gave birth extremely quickly. Kirsty’s pregnancy had progressed well and so it was completely unexpected when after an exercise class she went to the toilet and felt she was about to give birth. Some mothers had just a few hours in hospital before giving birth, often waiting for or receiving treatment to try to delay the birth. Gradual symptoms
For other mothers, there was a long period of days or weeks from the first symptoms and an idea that something was wrong until they finally gave birth. The symptoms mothers experienced included bleeding, loss of fluid around the baby or pains around their abdomen. Some mothers stayed in hospital while others were admitted and discharged, sometimes repeatedly. Some felt their symptoms were not taken seriously. Kamie had already experienced the loss of a baby at 20 weeks. So when she had the same symptoms with her next pregnancy she felt upset that people were “fobbing you off all the time, like I don't ring a midwife for no reason”. Understanding the prognosis
Some parents were told the likely outcome by a doctor in very straightforward terms, that there was no room for hope and that their baby would not survive. But some parents received conflicting opinions which raised “false hope”. Matthew described how “the longer we were there we realised that actually nobody has a clue. Right? I mean, people do have an idea. But nobody really knows, until the baby's born”. Waiting a long time to find out what was wrong was often frustrating and distressing, particularly when communication with staff was poor. Fathers also had a difficult time. Facilities were often poor for them and they often described a period of extreme worry about their partner and baby. Those with older children also had to juggle caring for them and maintaining a sense of normality at home. Making difficult decisions about the pregnancy
Parents were sometimes faced with difficult decisions, for example around preventive treatment or induction. Some mothers were offered treatment such as stitching the cervix closed to try to delay birth, if it was clinically appropriate. Unfortunately, this wasn’t successful although the same treatment was successful for some of these mothers in later pregnancies. Making the decision to have a stitch (also known as cerclage) was difficult for some parents. They realised that by pursuing treatment to save their baby, they could be delaying birth for only a few days or weeks. This could mean their baby survived, but would be born very prematurely, and so have a high chance of poor health. Some parents had to decide whether to have an induction to start labour and end the pregnancy, knowing their baby wouldn’t survive. If a woman’s waters break very early, it may be necessary to induce labour due to the risk of severe infection (maternal sepsis). Other parents contemplated an induction to end their pregnancy as they knew their baby was going to be born early and they didn’t want them to suffer. Parents found it extremely hard choosing to induce the birth when the baby seemed healthy. Mothers described feeling strong movements and kicking or they heard their baby’s strong heartbeat. Fathers often described the vital importance of the health of their partner as well as that of the baby when making the decision. This was sometimes difficult for mothers torn between their love for their unborn baby, partner and children. Lindsay’s husband wanted her to focus on how their older son “needs his Mum. You know, regardless of what your instincts are, he needs you to come home.” Most parents felt there wasn’t really a decision to make when the mother’s life was in danger and agreed to their labour being started early. Many parents felt they would prefer the choice to be taken out of their hands by labour starting naturally. For some parents this did happen. When Asun went to have her labour induced, her cervix was already opening, “Obviously everything changed from there … because obviously for me it was easier to go down that road, natural birth - that's what I wanted”.
For the mothers we spoke to, going through labour and birth knowing that their baby would not survive was extremely difficult and emotional.