Coming home after losing a baby at 20–24 weeks of pregnancy
While parents wanted to get away from the hospital as soon as possible, and start to grieve for their baby at home, leaving their baby...
When a baby dies, there are several options available to try to understand the cause. Most mothers we spoke to had investigations of their placenta and blood tests to try and understand more about the reason for their loss. When a baby has died, either before or after birth, parents may be offered a post-mortem, for which the parents have to give signed consent. Deciding whether or not to have a post-mortem was a very individual decision for parents.
Some parents chose to have a post-mortem to try to find the reason for their baby’s death, which could help them to understand their loss and plan another pregnancy.
Some parents were worried about the possibility of a genetic condition. The appearance of Kerry’s baby suggested there may be a genetic cause which a post-mortem could reveal. Some parents said they wanted an investigation so that more could be done in future to help babies with similar problems.
Some parents chose not to have a post-mortem. In some cases it was because there was no problem with the appearance of their baby’s body and the cause of the death was thought to be associated with the mother’s health rather than the baby.
Kelly and Kamie had more than one loss. The post-mortems with their first baby had been inconclusive, and so they both chose not to have a post-mortem on their second child as they didn’t feel it would help. Michelle and Ian decided that their family was complete and so didn’t seek additional information about why their baby had died. Some parents did not want their baby’s body to be ‘tampered with’. Several mothers who chose not to have a post-mortem did agree to their blood and placenta being tested to try and establish the cause of death. This could help understand whether there was a problem with the mother’s health that could have explained what happened.
Making the decision to have a post-mortem or not often came at a really difficult time for parents, either during labour or straight after birth. Helen Z and her husband initially decided they weren’t going to have a post-mortem as they didn’t want to put their baby through the procedure. But over the next week they changed their mind because they felt they didn’t want to put another baby at risk in a future pregnancy if there was something wrong.
Parents had to wait up to 4 months to receive the results of a post-mortem. Most received a paper copy in the post before meeting with a consultant to discuss the results. Some parents found the medical language of the written report very difficult to understand. They generally found the appointment with the consultant helpful and were reassured if they were thinking about getting pregnant again. Lindsay’s consultant said they could have ‘all the time in the world’ to discuss the results. Lisa and Matt also felt they were given plenty of time for questions. But a few parents did not have such a good experience. Vikki found her discussion with the consultant ‘rushed’ and Joelle felt her consultation was impersonal, talking about her uterus and not her as an individual.
For some parents, the post-mortem offered answers which helped with planning future pregnancies. Several mothers had problems with their cervix or blood clotting identified. Alison received confirmation that her baby had no kidneys and so would not have survived after birth.
In some cases parents found it helpful to have confirmation there was nothing else wrong with the baby or to have a cause of death ruled out. Other parents found inconclusive results frustrating, with lots of probable causes such as infection but nothing definite. This was particularly difficult for some mothers who felt guilty that their body let their baby down. Joelle emphasised how important it was to believe other people when they said it wasn’t your fault no matter how hard that was.
Several parents we talked to had experienced the loss of a baby in pregnancy several times. Some were offered help through special recurrent loss clinics while others struggled to obtain further investigations to explain their loss. Emily and Mike were frustrated when Emily was told she wasn’t eligible to attend a recurrent miscarriage clinic and appreciated the help of a midwife to access the service.
While parents wanted to get away from the hospital as soon as possible, and start to grieve for their baby at home, leaving their baby...
Decisions about whether to have a funeral Parents were often offered a funeral for their baby, which for many came as a surprise. They were...