Coping With Miscarriage: Break The Silence
Coping with miscarriage is unbelievably hard. It can have a devastating impact on your physical, emotional and mental health. This is only made worse by the fact that many women simply do not get the medical care that is much needed and the emotional and mental support they so desperately require to help cope with their loss.
Statistics show that miscarriage is common with approximately 1 in 4 pregnancies ending this way. Despite this, it is unfortunately still shrouded in taboo.
The secret club
It’s the secret club that absolutely no one wants to join but that sadly many of us do. The club where we lick our wounds and cope with our grief in silence, cast out from hospital or clinics with a blunt explanation (or lack of) that it’s just one of those things. Terms like “products of conception” can be flung about meaninglessly. It can feel that there is no thought for the life we have just lost, the dreams that have been cut short and the hope that has just died along with our baby.
Around 85% of miscarriages occur within the first trimester. This means most women (and their partners) will suffer and mourn quietly and not feel able to talk about it. This is mostly down to the “12-week rule” that is culturally embedded in our society. It’s an unspoken rule that forces us to hedge our bets about our pregnancies. Miscarriage at that point is just a reality that we have to deal with, without fuss.
Aversion to grief
For those of us that have flouted this rule, announced early and then lost, we are all too often met with comments such as “you can try again” or “at least you were not too far along”. The phrase “you have a kid already”is particularly hurtful but can often be delivered. Well-meaning? In most cases yes. But a lot of the time, these insensitive comments are made because people simply do not know what else to say. We have such an aversion to handling grief and loss. Many people will just avoid you so they do not have to contend with a conversation that makes them uncomfortable.
This only adds to the layer of guilt, failure and shame that many of us have felt. Indeed, many will not say anything for fear of making people feel this way. Despite the fact that sharing our grief and simply feeling able to talk about the loss of our child, will without doubt help to ease the pain we are experiencing and make coping with miscarriage much less isolating.
So how can we make change?
Let’s open up and share our stories
For all men and women out there who are experiencing loss, know that you may feel lonely but you are certainly not alone. Speak up. You may be surprised by how many women you know are encouraged to then tell their story and by sharing yours, you could be comforting another that is coping with miscarriage alone too. Educate those around you, have an open dialogue and make it a less scary topic to approach.
By normalising the conversation around miscarriage we can break the taboo. We can change our cultural ideologies and preconceptions around reproduction and pregnancy. We encourage discussion and empathy. And we break down the social expectation that we should just carry on as normal after experiencing loss.
I have shared my own story below and for anyone that is trying to navigate pregnancy or baby loss and need an understanding and supportive ear, my door and inbox is always open. firstname.lastname@example.org
Let’s challenge the 12 week pregnancy rule
Pregnancy hormones, extreme fatigue, nausea and vomiting, tender breasts, and the constant need to wee make life growing a human no easy feat. For many women, it’s made harder by the unwritten social rule that says they should keep their news quiet — at least for the first 12 weeks.
But women should feel supported to announce their pregnancies earlier if they choose to, so that they have both an opportunity to celebrate, and to receive support in the event of a pregnancy loss.
Keeping quiet makes the hurt of miscarriage so much worse. At any given moment, it’s very likely that someone in your friendship group is going through it, silently and in pain. Let’s create a more compassionate society where they feel more comfortable in speaking out and can access a caring and supportive community that many so desperately need after losing a baby.
More sensitivity in how miscarriages are handled medically
Firstly, can we please banish the use of cold medical terms in front of someone that has just been told their baby has died! Hearing the term ‘product of conception’ used to describe the beloved baby I have just lost is quite simply heart-breaking.
Secondly, don’t discount us and brush us off with “it just happens” when we seek an explanation.
Mylene Klass summed it up beautifully when she wrote on the topic of miscarriage this week:
“Imagine if you broke your arm three times or if you had three heart attacks before the doctor took you seriously. It’s unthinkable – but women who have had miscarriages have to have three in a row before it is considered a medical issue. It sounds barbaric, but that’s what we’re doing to women in the UK.”
Thankfully, a petition to change the current 3 miscarriage care rule has already gathered more than 120,000 signatures. Let’s hope that change is on the horizon. Miscarriage services need to be changed to ensure they are available to everyone, and women are followed up to assess their mental wellbeing. Support must be offered to those who need help in coping with miscarriage, and advice routinely given to help them prepare for a subsequent pregnancy.
More post miscarriage care and support in the months after
Anxiety, depression, post-traumatic stress and suicide are strongly associated with miscarriage. It is important to note that it is not only recurrent miscarriage that is associated with these psychological conditions. One miscarriage can have a significant psychological impact. A recent study from Tommy’s found that nine months after a pregnancy loss, 18% of women met the criteria for post-traumatic stress, 17% for moderate to severe anxiety, and 6% for moderate to severe depression.
This demonstrates that distress remains at clinically important levels for some months after an early pregnancy loss. The study also revealed that one miscarriage also increased the likelihood of suicide. Women who had experienced it were 3.8 times more likely to die by suicide.
The grief and psychological impact of coping with miscarriage are all too often not comprehended, by society and worse still, by healthcare professionals. All too often , loss is minimised by the view that a pregnancy before 12 weeks ‘isn’t a real baby’ or that ‘it just wasn’t meant to be’.
Charities that can help
Thankfully, there are organisations and charities out there that can help during this deeply traumatic and upsetting time.
Tommy’s is the largest UK charity researching the causes and prevention of pregnancy complications, miscarriage, stillbirth, premature birth and neonatal death. Its website is full of useful resources and information that is clearly laid out and easy to navigate. There is also a dedicated baby loss support group and a list of other online support groups too.
Cradle provides a range of services to support anyone affected by early pregnancy loss. Providing peer support, fast track counselling and donating CRADLE Comfort Bags to the NHS, which are made available to women during their hospital care. More than 40 NHS Hospitals have a CRADLE early pregnancy loss bereavement service, many of which have been set up by healthcare professionals that want to drive change.
The emotional trauma of pregnancy and baby loss on men is often overlooked. Strong Men is a charity that aims to support men following bereavement. Graham Baker shares why he got involved with Strong Men after he and his wife lost their baby daughter ‘Scarlett’ at childbirth.
Support at work
Businesses can also help support their employees by implementing a policy that allows them to take time off following pregnancy loss. Currently, bereavement legislation entitles parents who lose a baby after 24 weeks to two weeks of paid bereavement leave. However, for parents who lose a baby before 24 weeks, there is currently no provision in place.
That means many are forced to have to ask for paid leave or sick leave – and it may not always be granted. This is so unfair. And some may not even ask because of the stigma attached so end up coping with miscarriage in public but utterly alone.
Many women will experience the loss of a baby as a deeply personal tragedy. Meanwhile, others will handle it more pragmatically. However a woman chooses to cope with their loss, they should absolutely be able to have their voices heard without judgement, shame or stigma.
I’m one of those unfortunate souls that are in the 1% of couples affected by recurrent miscarriage. This is defined as having three or more consecutive miscarriages.
Mine were all in the space of 18 months and after I had had a healthy and fairly straightforward pregnancy with my first son.
By the time I had my second miscarriage in 2017, I knew something was wrong. My first had been dismissed as “it happens” with instructions to “try again”. And despite the devastation we felt, we didn’t question this. But when I lost the second baby, in exactly the same way at exactly the same number of weeks, I knew something was up. I wasn’t going to be fobbed off.
Despite the rule of three, I somehow managed to persuade one of my lovely doctors to send me for blood tests. The tests came back, I had APS (Antiphospholipid Syndrome). This is an autoimmune disease that affects the blood and its ability to clot. In pregnancy, the APS antibodies can cause miscarriage, pre-eclampsia, small babies, early deliveries and stillbirth.
So I had my answer. It wasn’t bad luck, it didn’t just happen. I had developed a medical condition that was causing my miscarriages.
Taking time out
Despite knowing what was wrong, I simply couldn’t face trying again. We decided to leave it for a while and it was a year until I fell pregnant again. As soon as I did, my doctor put me on clexane. I also took an aspirin a day to thin my blood. Unfortunately, (at 9 weeks again) I went for a scan and no heartbeat was detected. However, as I had now hit the 3 miscarriages milestone, I was entitled to a number of tests.
The foetus was sent for karyotyping. I was also given an ultrasound to check the structure of my womb. Finally, both my husband and I were given genetic testing. Of course, the bloods came back showing APS again. However, the karyotyping results revealed that the baby was a girl and that she had Turner Syndrome. This is a female-only genetic disorder that affects about 1 in every 2,000 baby girls. It was clear that this was the likely reason for miscarrying and not the APS, given I was on treatment for it.
There is always hope
Coping with miscarriage is so hard. I found it particularly difficult after losing our baby girl. My mental health suffered significantly, the waves of grief hit me harder and for longer and it fundamentally changed the person I am and how I see things. But I wasn’t ready to give up hope. So I started to furiously research my options.
I decided to get some private tests done so everything was on the table. I needed to know the full details of the battle I was facing. And boy was it a battle! I was 39 and not only did I have APS but I also had low AMH and high FSH (if you know, you know). One insensitive doctor bluntly informed me I was approaching menopause!
Still, I was determined (note – stubborn) and I wasn’t willing to give up without a fight. So I commenced a 6-month protocol to get my emotional and physical health and wellbeing into the best possible place before giving it one last shot.
I worked with Naava at The Fertility Support Company who is simply amazing. She gave me hope when I had none and made me feel in control of my own body.
The protocol consisted of dietary and lifestyle changes, plus tailored herb formulas that Naava prescribed each month. I also underwent with twice-monthly fertility acupuncture with the wonderful Hannah Pearn. I checked my profile markers with monthly home blood tests via Medichecks (things like thyroid, FSH, hormones). This allowed me to check everything was going in the right direction.
Seeing the change for the better in my monthly blood work while following Naavas protocol was brilliant. After 6 months my husband and I started TTC. I fell pregnant quickly but was unbelievably anxious.
For anyone that’s gone through recurrent miscarriage, you’ll understand how awful the run-up to going in for a scan can be. In the first trimester, I had bi-weekly scans and at every one I could hardly look. I fully expected the sonographer to tell me they couldn’t find a heartbeat.
Despite never getting that bad news I totally disassociated myself from the pregnancy. The anxiety did subside as the pregnancy progressed. Once I reached around 26 weeks I started to believe everything would be ok.
A new baby
It was a very tough (both physically and mentally) pregnancy but my lovely boy is now one years old. I’d go through it all again in a heartbeat. I’ll never entirely shake the trauma from my losses. I think about them all the time. But, I want women who are where I have been, to know that there is always hope. No matter what people tell you or what battles you face.