Deciding whether to have a post mortem

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.

Why parents decided to have a post-mortem

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.

Vikki Z had an overwhelming desire to have another baby and wanted to know what plans needed to be put in place.

Age at interview 38

Gender Female

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Sarah decided to have a post-mortem to help with planning a future pregnancy so they wouldn’st have to experience losing a baby again.

Age at interview 34

Gender Female

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Sarah really appreciated how the midwives at her local hospital would ring her and keep her up to date every time her baby was moved.

Age at interview 34

Gender Female

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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.

Alison’s baby had a rare kidney condition and decided to have a post-mortem to help with research.

Age at interview 30

Gender Female

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Liz opted for a post-mortem to help check whether anything went wrong that she was unaware of at the time.

Age at interview 40

Gender Female

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Why parents decided not to have a post-mortem

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.

Kamie had a post-mortem for her daughter Hope but as this was inconclusive she decided not to have one for Lottie.

Lindsay explained how she didn’st want a post-mortem because she didn’st want her baby’s body tampered with.

Age at interview 35

Gender Female

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Making the decision about a post-mortem

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.

Lindsay explained how difficult it was to manage her grief when she went home while trying to behave normally for her son.

Age at interview 35

Gender Female

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Helen Z described how planning another pregnancy made her change her mind about whether to have a post-mortem.

Age at interview 37

Gender Female

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Getting the results of investigations

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.

Camille’s consultant wanted to give her the results of the post-mortem in person because the report is written in very technical language.

Age at interview 26

Gender Female

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Alison found it helpful having a written copy of the report to remind her of things that she was told when she was in hospital.

Age at interview 30

Gender Female

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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.

Investigations helped Kelly understand the reasons why she had gone into labour early and plan for another pregnancy.

Age at interview 39

Gender Female

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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.

Vikki Z was reassured and frustrated by the inconclusive results of the post-mortem.

Age at interview 38

Gender Female

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Carly had mixed feelings about the post-mortem results.

Age at interview 30

Gender Female

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Courtney found it hard not to blame herself when she found out there was a problem with her cervix.

Age at interview 30

Gender Female

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Further investigations and treatment

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.

Vikki Z was offered a plan for her next pregnancy after attending the recurrent miscarriage clinic.

Age at interview 38

Gender Female

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