For several women, their experience of having to be around women whose pregnancies and families were progressing normally, was why they delayed seeking medical attention the next time they miscarried.
I avoided calling an ambulance when I was at home, so faint with blood loss that I couldn’t lift my head off the floor, because I knew I’d be taken to a mat ward and couldn’t face it.
It’s why I didn’t go for medical help the next time it happened, until I couldn’t remain conscious.
Several women also mentioned having to return repeatedly to the early pregnancy or maternity unit, again having to pass the gauntlet of pregnant bellies and new-born babies, just for follow-up blood tests
This was one of the things that made me most angry when I was miscarrying, having to return repeatedly, on my own (because of pandemic restrictions) to the “scene of the crime”.
The women who were treated as a nuisance…or as I now call it, the “why are you here” tendency
The GP[…]got me to pee in a cup, pregnancy test was negative, she didn’t know why we were there, I wasn’t pregnant any more
the sonographer asked why I was there because there were no ‘products of conception’ remaining..
I was eventually seen by a (male) doctor who repeatedly asked rather rudely why I was there and was I sure I wasn’t just having a heavy period? Was bluntly told ‘because your urine sample says you’re not pregnant’ (this was how I found out I had definitely miscarried).
…or turned away, and told they had their dates wrong…
told to come back *2 weeks* later in case I had my dates wrong. Spoiler: still a miscarriage
…or told that they had never been pregnant in the first place
I have a medical condition that may make miscarriages more likely. I was told I wouldn’t receive investigation or treatment until I had 4 miscarriages. I went to my GP after my first, because I wanted it recorded. He wouldn’t because I couldn’t prove my pregnancy.
Here I’d like to pause for a little bit of context about why these annoying women “were here”. The current rule for the NHS is that your miscarriage will only be investigated after you’ve had three. This rule was highlighted by a lot of women as one they would like changed.
It would have been easier not to have to wait until after 3 miscarriages to be referred for investigation. A blood test identified Lupus Anticoagulant, use of Blood thinners can prevent miscarriage. Maybe they would’ve prevented previous? Will never know…
This rule arguably contributes to the insensitive treatment of women who are not yet at their third miscarriage
There were nights I bled so heavily it woke me up, I would just sit on the toilet in the dark for hours in the middle of the night because the toilet was easy to clean. I would phone periodically to let them know I was still bleeding but the response was “you’re on the gynae waiting list, what do you want me to do”
It is also not recommended by The Lancet,
who in April this year published a special series called Miscarriage Matters
(a very apt pun, because based on the stories I have received from women, it very much does not.) The three miscarriage rule, says
The Lancet, “is ideological, not evidence based,” and it “has created a pervasive attitude of acceptance of miscarriage, urging women to “just try again.” This attitude not only “underestimates, and risks dismissing, the personal physical and mental consequences of a miscarriage,” but has also “affected the availability and quality of care that women receive after a miscarriage and does not accurately reflect the evidence on management.”
And what are those physical and mental c0nsquences? Well, apart from the serious psychological impact
, “previous miscarriage is associated with a higher risk of preterm birth, fetal growth restriction, and other obstetric complications in subsequent pregnancies. [It] is also associated with a higher risk of long-term health problems for women, including cardiovascular disease [and] venous thromboembolism.”
As the authors point out, therefore, a history of repeated miscarriage might represent an important data point for reducing a woman’s risk of future cardiovascular disease (the number one killer of women in Europe and the US, let us not forget). Are these risk factors used in any of the commonly used heart disease risk prediction models, or any of the AIs proudly heralded as predicting heart attacks five years before they happen
? Are they f*ck. Just women’s issues nothing to see here 🤪
And as a “women’s issue,” naturally the data is woeful. In fact, there isn’t even a universally agreed-upon definition for what constitutes a miscarriage, making international comparisons more or less impossible – that said, most countries, including the UK, don’t publish this data
anyway. In fact, we don’t even collect it properly: only women who miscarry at a hospital will have their miscarriage recorded.
The perception of miscarriage as a single event with little to no relevance to a woman’s health more broadly has, says the Lancet, “resulted in a deficiency of high-quality epidemiology, and trials for management and prevention that should be available to guide practice and guidelines.” The lack of medical progress “should be shocking,” they point out. Instead, there is “a pervasive acceptance
Key to The Lancet‘s call for better data collection and more research is the recommendation that the three miscarriage rule should be scrapped:
…after one miscarriage women should have their health needs evaluated and provided with information and guidance to support future pregnancies If a second miscarriage occurs, women should be offered an appointment at a miscarriage clinic for a full blood count and thyroid function tests and have extra support and early scans for reassurance in any subsequent pregnancies. After three miscarriages additional tests, including genetic testing and a pelvic ultrasound, should be offered.
They further recommend that women with early pregnancy bleeding and a history of one or more miscarriages should be offered progesterone treatment following a health economic analysis which found
that this was “more effective and less costly compared with placebo treatment .”
These recommendations on better data collection and more timely treatment are welcome and should absolutely be integrated into miscarriage care immediately. I also have some of my own to add:
1: Entirely separate treatment areas
All miscarrying women should be treated away from labour and other maternity wards. Miscarriage is a bereavement. You wouldn’t host a funeral at a fairground, so don’t group grieving women in with the very thing that have just lost: a pregnancy and a newborn baby
When I went for a scan, there was a one way system, so women didn’t have to exit back through the waiting room in tears. This should be the case everywhere
2: Follow-up blood tests at local GP surgery
Relatedly, don’t require women to keep coming back to the hospital for blood tests just to see if hCG levels are lowering normally. These can and should be done at their local GP surgery.
3: Language change
SO MANY women spoke about the pain of their dead baby being referred to as “cells” and “tissue”. It would cost nothing to end this practice.
4: Automate systems
A miscarriage should automatically trigger the cancellation of future antenatal appointments: women should not have to be calling the hospital to cancel them themselves, and they certainly shouldn’t be sent letters chastising them for failing to show up.
5: Ensure notes are passed on and, most importantly, read
6: Early Pregnancy Units should be open 24/7
Miscarriages don’t keep office hours so neither should treatment for them. It is not reasonable to tell a heavily bleeding woman to call back in three days.
7: Recognise that a miscarriage is not just a heavy period
Give women appropriate pain relief options and set their expectations appropriately.
8: Above all, make compassion and empathy a prerequisite for working with miscarrying women
I waited for 6 hours on a labour ward and was shouted at by a ward nurse because my husband sat on the bed to cuddle me.
The scan of my undeveloped baby was kept with my notes and I had to see it repeatedly. It was even given to me as I went into maternity assessment at the start of labour, which my husband complained about.
Many of the stories I was sent were a result of bad systems. But FAR too many were simply a result of thoughtless treatment. Together with language change, a bit of compassion would be a very low-cost way of ensuring a miscarriage isn’t any more traumatic than it needs to be. As one of my respondents pointed out, “It may be routine for them but for me, it felt like my world was ending.”