'The care people receive after a miscarriage can have a significant impact'

One in four pregnancies will end in a first-trimester miscarriage, which is the first 12 weeks of a pregnancy.

Since 2023 in Ireland, recurrent miscarriage is defined as two consecutive pregnancy losses in a row. It affects between 1% and 5% of the population.

These stark figures illustrate how common miscarriages are. But despite the frequency of miscarriages, the topic remains taboo in a lot of cases, with many women and couples feeling like they have nowhere to turn to when they experience pregnancy loss.

“While miscarriage is referred to as common for many, it’s still unexpected, and it can be upsetting and sometimes even traumatic,” explains Professor O’Donoghue, Consultant Obstetrician, CUMH and Lead at the Pregnancy Loss Research Group at University College Cork.

“Our research with people who experience miscarriage also shows that the silence and stigma that’s still around pregnancy loss can be made worse by the lack of reliable and accessible information.

“The care that people receive after they experience a miscarriage can have a significant impact,” says Professor O’Donoghue.

“It can make a real difference to how they cope with that experience of miscarriage. So even the care they get after one or any miscarriage is really important, and we know that for women, being aware of their treatment options and what support is available to them may improve that feeling of control during that sometimes horrible event and afterwards.

“How they’re looked after, and the information they get, the support they have access to, but also how they can drive that themselves as a person experiencing this type of pregnancy complication, that can also have a positive effect on future pregnancy or future pregnancy outcomes.”

A focus on accessible information and support is the driver behind a series of new resources that are now available for women who experience miscarriages or recurrent miscarriages. 

They include a series of booklets that provide accessible and wide-ranging information for people who have experienced a miscarriage, answering questions such as what happens next, what supports are available, and providing important snippets of real-world experiences.

To ensure inclusivity, the resources also include videos in multiple languages such as Arabic, Polish, Romanian, French and Irish Sign Language. 

There is also an appointment letter template for recurrent miscarriage clinics, a checklist for use within emergency departments for staff to use when people initially present with signs of miscarriage, and case studies.

The resources have been developed as part of the Health Research Board-funded RE:CURRENT study, and crucially, the development also includes information from people who have experienced miscarriage and recurrent miscarriage, together with health professionals and decision-makers in the country’s maternity services.

Historically, information, care and support for people who have experienced miscarriage has been inconsistent, and at times difficult to come by. This situation was borne out in RE:CURRENT, a national care service evaluation conducted by the Pregnancy Loss Research Group over four years. 

A survey within the study revealed that almost one in four of those who participated rated their overall care after a miscarriage as poor, and one in five said it was worse than they expected.

“We found that people were more likely to say they had a better care experience if they got standardised or structured information, if they got answers about investigation, if they got support afterwards, and if they had improved care in a future early pregnancy as well,” says Professor O’Donoghue.

For Professor O’Donoghue and her team, the study highlighted the real need to provide information about miscarriage and recurrent miscarriage.

“Although we set out to study recurrent miscarriage, when you’re talking to people about their experience, they’re giving you their experience of each individual miscarriage and often how they were managed or treated during their first pregnancy loss.”

Recurrent miscarriage is now defined as the loss of two or more pregnancies in a row before 12 weeks of pregnancy.

This has been updated within the last two years to make sure care is available after every miscarriage, instead of women having to experience three or more miscarriages before they were able to access a certain type of care or have certain investigations carried out.

In speaking to women with lived experiences, Professor O’Donoghue and her team found that information was so important to the women experiencing miscarriages; information about their management choices, what might happen to them around the time of pregnancy loss, what might happen if that was at home or in hospital? What decisions should they make around miscarriage care? What happens at clinic appointments?

“Words like ‘empowerment’ sometimes get a bit overused, but it’s really important that people have access to reliable, accurate health information, rather than just random medical pieces they might get off a search through a social media channel or Dr Google.”

All of the resources are available via the Pregnancy and Infant Loss Ireland website: www.pregnancyandinfantloss.ie. 

The booklets and videos also available on the Cork Miscarriage website: www.corkmiscarriage.com.

Copies of the booklets have also been distributed to maternity hospitals/units with the support of the National Women and Infants Programme.