AFTER undergoing three traumatic miscarriages in two years, university lecturer Rachel Rice had a question.
“I had had two pregnancies prior to my first miscarriage and yet I went into my third pregnancy ignorant of the possibility that this might happen — how was it that, as part of the story of pregnancy, this was not something I knew about?”
Rice’s first miscarriage happened without warning in the first trimester, at 12 weeks, in July, 2010. The lecturer at the School of Applied Social Studies in UCC had her second miscarriage some months later, in February, 2011. This one occurred at just eight weeks. Some months later, in July, the Midleton-based mum had her third miscarriage, which occurred during the second trimester of pregnancy.
“The symptoms, diagnosis and management for each was different, so I needed different information, support and advice for each one.
“It really made me realise how little I knew about miscarriage,” she says, recalling that the aftermath was “a very difficult time and because I didn’t know a lot about it, I didn’t know how to talk about it. It was a very isolating and lonely time,” recalls Rice, now 45.
“For me, when I was diagnosed, I was so unprepared and the information that I got in the hospital didn’t really sink in,” she says, recalling that it would have been hugely helpful and supportive if, at that time, she had had access to information that was medically accurate but written in a sensitive way and in clear understandable language available to her outside the time she was with her healthcare providers.
So it’s not surprising, then, that Rice was one of an army of healthcare personnel and parents consulted as part of the creation of a pioneering new website, which provides medically accurate, sensitive and user-friendly information for those who experience first trimester miscarriage.
“Having a website that would explain the new language and the medical terminology around miscarriage would have been hugely beneficial,” says Rice, who now has three children aged 13, 10 and seven.
One in four pregnancies ends in first trimester miscarriage. For many women and their partners, miscarriage is unexpected and can be an upsetting experience.
Launched earlier this month by the Pregnancy Loss Research Group and INFANT Research Centre at University College Cork, the facility is designed to guide users through what to expect when a miscarriage happens. It explains what to do and how to access appropriate services, while complementing the care and support women receive in maternity hospitals. It provides information on pregnancy, pregnancy concerns, miscarriage symptoms, miscarriage types, management and services, feelings and emotions, and pregnancy after miscarriage.
While the website is specific to the services operating in Cork University Maternity Hospital, the information is relevant to parents and maternity services nationally and internationally.
It’s not only expected to be a helpful resource for clinical staff who care for bereaved parents through the difficult journey of miscarriage, it will also act as a valuable resource for the partners of women who miscarry during the first trimester. This, says Rice, is extremely important:
“It would have been very helpful for my husband too as it was his first time to experience this and I think it would have been helpful for us to have clear access to information.
“There were websites about pregnancy at the time, but in terms of information about first trimester miscarriage, the information was very anecdotal; from people who were blogging — there was no expert, reliable, medically accurate source on this topic.
“Miscarriage is not just an emotional experience, it is also a very physical experience for women and they need information - the questions around miscarriage only became apparent to me when I went through the experience myself, because I knew so little about it beforehand.”
The website, www.corkmiscarriage. com, which is the first of its kind in this country, was developed by Clinical Bereavement Midwife Specialist Anna Maria Verling and Rice, along with a group of experts.
“We knew from research that had been carried out that awareness around first trimester miscarriage was very poor,” says Verling, who adds that from supporting women who had gone through a first trimester miscarriage, she was aware that very often women were seeking the basic information around it.
“We identified a particular gap in the information and support available to women and their partners who experience first trimester miscarriage. Couples need to have access to reliable, medically accurate information when healthcare professionals may not be available to answer their questions and alleviate their worries. Developing an online resource meets this need.
“There is stigma and silence around pregnancy loss, particularly in the first trimester, because parents-to-be may not have shared the information that the woman was pregnant,” she said, adding that as a result, people can feel isolated and lonely following a first trimester miscarriage, which she described as “one of the most common adverse outcomes in early pregnancy.”
In all, the project took about three years — the website was carefully built around feedback from consultations right across the sector including midwives, doctors, obstetricians and GPs, as well as with parents.
“We wanted to ensure that the language was appropriate and the content accurate. What we were hoping is that the content would be helpful to women but also to the healthcare personnel looking after them.
“We hope the website will be a valuable resource for couples and for healthcare professionals. We also hope that it will raise public awareness and lessen the stigma around miscarriage, and support GPs in the community by providing a resource to which they can refer patients.”
Miscarriage is not just emotional experience, it is also a very physical experience for women and they need information — the questions around miscarriage only became apparent to me when I went through the experience myself.