Metro: It’s not just down to infertile couples to solve the adoption crisis

Why don’t you just adopt

My third article for Metro’s Fertility Month series examines how It’s not just down to infertile couples to solve the adoption crisis

Anthony Douglas, head of Cafcass (the public body representing children in care), said in a recent interview with the Daily Telegraph that the growing success of IVF has meant fewer people will consider adopting children:

“IVF used to be around 7% successful and now it’s around 30%.

So as a choice, adoption is competing with lots of other ways of having children.”

My biggest bugbear with the ‘it’s all the fault of selfish IVF couples’ argument (amongst many) is that it positions the adoption crisis as an issue that’s solely down to people with fertility problems to solve.

IVF isn’t a quick and easy fix either to conception, or to solving the adoption crisis - and it doesn’t help solve the latter to pretend it does.

Adoption is about finding homes for children, not children for infertile couples. And pretending that if selfish infertile couples stopped having IVF the problem would get sorted does a disservice to infertile couples, and to children in care.

This article is deliberately provocative, as I’ve tried to challenge the hypocrisies around this issue straight on - because I’m frankly fed up of the IVF bashing (and the perpetual double standards for infertile vs fertile couples.)

“Infertile couples are asked ‘why don’t you just adopt?’

To which I would respond, ‘Why didn’t you just adopt?’”

---

READ THE FULL ARTICLE HERE:

It’s not just down to infertile couples to solve the adoption crisis

---

Have your say

Are you fed up of being told ‘why don’t you just adopt?’

I’m writing a book that challenges the fantasy infertility narrative of endless positivity and happy endings, by sharing real women’s (and men’s) stories about what it’s really like to struggle with infertility and pregnancy loss.

My goal is to represent as many different perspectives as possible: if you’ve experienced infertility or pregnancy loss — whether your journey is current or past, whether successful or not — I’d be honoured if you’d consider sharing your story anonymously.

Metro: Why treatment for male infertility is failing both men and women

Men matter too

My second article for Metro’s Fertility Month series examines how treatment for male infertility is failing both men and women

Men are massively overlooked in the fertility experience more generally: but the inadequate care for male infertility - inadequate diagnosis, meaning inadequate treatment - is also harming women, as ICSI treatment bypasses the male problem to treat the issue in the woman’s body.

Normally I rail against articles which focus on the miracle baby success stories, but in this instance these examples - real examples, from real couples - were pretty critical for the overall argument (spoiler alert: that if treatable problems were diagnosed and treated, this might increase the chances of success, or eliminate the need for invasive ICSI altogether.) These stories are used to demonstrate tangible examples where proper care has made a tangible difference to the outcome. Which I hope will spark discussion and debate!

It’s an issue that’s woefully ignored in both public discourse and within the fertility industry itself - so I hope that this article will help to encourage more open conversations about this issue.

“Male infertility is a growing problem on a global scale — so when are clinicians going to start taking it more seriously?”

Read the full article here:

How treatment for male infertility is failing both men and women

---

Have your say

I’m writing a book that challenges the fantasy infertility narrative of endless positivity and happy endings, by sharing real women’s (and men’s) stories about what it’s really like to struggle with infertility and pregnancy loss. My goal is to represent as many different perspectives as possible — including the male perspective.

If as a couple you’ve experienced infertility or pregnancy loss (regardless of which partner has received the infertility diagnosis, if any)— whether your journey is current or past, whether successful or not — I’d be honoured if you’d consider sharing your story anonymously.

There are questionnaires for both the female and male perspective — and I’d particularly love to hear more from the guys!

Metro: How to support someone with fertility problems

I’m really excited to have the opportunity to write for Metro’s Fertility Month series: the first article is about how to support a friend or loved on struggling with infertility or pregnancy loss.

There's lots of articles about what not to say (aka infertility bingo), but Metro wanted something that offered guidance for what you should say or do instead. They commissioned me to write this piece based on the hundreds of responses to my anonymous questionnaire for women (and men) to share their stories, - specifically, to the question that asks respondents what advice you would give to anyone who's supporting a friend or loved one with fertility problems.

There's no universal right or wrong thing to say or do, but these suggestions are based on the answers of several hundred different women, so they're hopefully at least a pretty decent start.

These are just a couple of highlights:

“Say ‘I’m sorry’ Give us a hug and say ‘I’m so sorry’”

“Do not try to solve the problem There’s nothing you can say or do to fix this, so stop trying to do so. ”

“Just listen & acknowledge our distress.

Don’t feel you have to do anything other than listen.
Don’t tell us what to do or what to think or what to feel.

Just listen to us, and allow us to be sad and angry at how unfair life is. Be there, let us know you care, that you’re there, and that you want to understand our feelings and needs. Acknowledge that it’s an unimaginably cruel situation and let us offload”

---

Read the full article here:

Metro: How to support someone with fertility problems

---

HAVE YOUR SAY

My goal for this book project is to represent as many different perspectives as possible .

If as a couple you’ve experienced infertility or pregnancy loss (regardless of which partner has received the infertility diagnosis, if any)— whether your journey is current or past, whether successful or not — I’d be honoured if you’d consider sharing your story anonymously.

If any of these ‘infertility bingo’ comments strike a chord and you’d like to get something off your chest, or suggest some advice of your own, I’d love to hear from you!

Speaking on LBC about infertility and miscarriage

I was listening to the Maajid Nawaz show on LBC on Sat 10th Nov, where he had a segment on infertility and miscarriage - following Michelle Obama’s interview where she revealed her own experience of IVF and miscarriage, and her feelings of isolation and shame.

He posed lots of questions to listeners for the phone-in: including whether we agreed with Mrs Obama that women did indeed suffer in silence - as well as the issue of delayed childbearing and egg freezing for women who wanted to prioritise their careers.

I called in while the fantastic Ruth Bender-Atik from the Miscarriage Association was on the line, and the researcher put me directly through to have my say.

Here’s the recording of my call - where you can hear me talking about:

• the fact that even when people do talk about their infertility struggles or miscarriages, it’s almost always after they’ve been successful - because society doesn’t want to accept that not all problems are fixable (and as a result there’s a belief that IVF is a sure-fire guarantee)

• challenging him about the reasons why women freeze their eggs - as the no 1 reason women freeze their eggs is because they’ve not met the right partner, not because they’re 'selfish career women’

• why I’d recommend counselling and finding your tribe if you’re going through similar struggles

#BloomFest: The Secret Self

I was honoured to be invited to speak on a panel at BloomFest on 8th November, bringing together my work life and my infertility life - this was truly ‘coming out of the closet’!

BloomFest is a one-day conference and the flagship event for the Bloom network, a professional network for women in communications. The theme for 2018 was ‘Fighting Our Fictions: Challenging myths within the industry’, with proceeds from the day supporting Women’s Aid

We believe that myths within our industry are barriers to women realising their ambitions. Accepted fictions about power, privilege, pay, parenthood and beyond, become the basis upon which the industry is built and influence how women shape ourselves and our careers. At BloomFest 2018, we will uncover and meet these fictions head on, challenging the narratives woven into the workplace and ourselves in order to drive real change.

It was daunting and thrilling to be on the bill alongside incredible women in the industry (keynotes were delivered by Dame Carolyn McCall and feminist campaigner Caroline Criado Perez), and it was a fantastic and inspirational day

I took part in a panel about the Secret Self, about hiding invisible struggles at work - concealing who we are, or what we face, in order to project a professional image of ambition and perfection. I was honoured to speak alongside some amazing women from my industry (Helen Calcraft, Founding Partner, Lucky Generals; Jan Gooding, Chair, Stonewall UK & President, Marketing Research Society; Charlie Hunt, Head of New Business, Digitas UK; Namrata Dhadialla, Associate Director, MediaCom; moderated by Victoria Brooks, Sustainability Strategy Director & Head of Programmes, Bloom) discussing issues including sexual harassment, cancer, mental health, sexuality, bereavement - and infertility & pregnancy loss.

Whilst the other sessions were filmed and tweeted, our session was kept private to respect people exposing their vulnerabilities - but what was very clear was that whatever we see on the surface, we never know what someone else might be going through. I was the nominated ‘infertility and pregnancy loss’ speaker, but I wasn’t the only one on the panel who’d gone through multiple rounds of IVF. I spoke to lots of different women during the day, and many revealed their own struggles.

Confessions from ‘The Booth of Truth’

Attendees were encouraged to share their anonymous confessions about their own experiences within the industry around key themes of the day; which were then posted on boards and shared with the audience.

These included:

“When your CEO tells you that he only hires ‘pretty blonde girls’ and then regularly invites female employees back to his hotel for champagne.”

“If a woman does call out a man for sexual harassment, she will never be able to find a job again.”

“I came back to work recently, six months after having my baby. Because, to keep my role, I had to. In hindsight, it was too early and I cried in secret, not being able to continue breastfeeding.”

“I lost my first daughter, she was stillborn. I left my job as no-one knew how to ‘deal’ with me after my loss.”

The last of these was utterly heartbreaking, and it’s exactly why we need to talk more openly about pregnancy loss - so that those who suffer devastating losses are supported, not awkwardly ignored.

Within the workplace - and outside of it as well - there are plenty of #EverydayActions that we can all embrace to help us thrive, not just survive: wisdom that I know I’ll try to carry with me:

WISE UP

1. Be proud and wear your scars: they make you you.

2. Know it takes more energy to hide than to flourish.

3. Understand you are not alone in your struggles, your fears, and your experiences.

4. Mistakes happen; learn and move on from them.

5. Remember diversity is more than just skin deep.

6. Don’t try to emulate others: be the best version of yourself.

7. Respect that people respond to challenges differently.

8. Remember judgement from others is often rooted in jealousy.

9. Know perfectionism can lead to paralysis; learn to let the little things go.

10. Recognise you can do it all; just not at the same time, unless you don a cape.

EYES UP

1. Take time to think about what success looks like for you: create your career map once you know your destination.

2. Play to your strengths: harness what you are good at to grow your gravitas.

3. Avoid the ‘just’ trap

4. Use language and body language to have more impact.

5.  Make time for training.

6. Step outside your comfort zone: challenge should be positive, not negative.

7. Focus on producing quality work not putting in hours: if your work is done, go home.

8. Invest in yourself: you can’t pour from an empty cup.

9.  Learn to delegate in every aspect of your life – work and home.

10. Surround yourself with people who lift you up – team, sponsors, mentors.

11. Don’t say yes to things when you want to say no; saying no is the best skill you’ll ever learn.

RISE UP

1. Give those who are under-represented a step up so they can be heard.

2. Call it out if you witness unsavoury behaviour, if you think there is a lack of representation in the room or if you feel something is not right.

3. Create a safe environment for your teams.

4. Demand blind CVs.

5. Talk to your male colleagues: we cannot thrive if we only talk in the echo chamber.

BloomFest 2018 Conference - 'Fighting Our Fictions' Actions from BLOOM

You can find out more about your rights at work whilst struggling with infertility and pregnancy loss in my post about Fertility at Work

Guardian: I’m a feminist. So why does infertility make me feel like a failure?

I wrote an article for The Guardian published on World Fertility Day, during UK Fertility Week about the impact of infertility on my female identity.

Read the full story here:

I’m a feminist. So why does infertility make me feel like a failure?

---

Reactions

Unlike my previous Guardian op-ed about miscarriage, this article did have comments enabled - obviously there were the predictable ‘why don’t you just adopt’ comments, but there were some thoughtful and compassionate comments also, that I thought worth highlighting:

---

---

---

---

---

---

---

---

It was a really challenging, but very rewarding piece to write - if this has struck a chord, I’d be honoured if you’d consider sharing your story

#FertilityFellas: a brief history of male infertility

This week is UK Fertility Week — and today’s theme is #FertilityFellas.

Fertility is not solely a female issue — men are half the fertility equation too, but are often ignored. To understand a bit more about how we got to this point, I thought it would be interesting to take a trip down memory lane, and have a look at some highlights in the history of male factor infertility.

Let’s jump back a few hundred years…

---

Don’t be silly, of course men don’t have fertility issues — it’s the woman who’s barren

Fertility and virility have historically been central to masculinity —so to be impotent or infertile was to be a failure as a man. So it’s not surprising that in years gone by, any inability to conceive was blamed on the woman — as long as the man wasn’t impotent, he was assumed to be fertile.

Daniel Sennert summed this up in his 1664 page-turner Practical Physick; The Fourth Book:

Hence we may gather, that Barrenness is oftner from a fault in the women then the men: for in men there is nothing required but fruitful Seed spent into a fruitful womb.

Jolly good — so as long as he got his rocks off, job done. If babies didn’t immediately spring forth it was definitely his barren wife’s fault.

Unsurprisingly, blokes were pretty happy with this theory, so it becomes a bit of a recurrent theme…

No doubt for James McMath in his 1694 banger The Expert Mid-wife: A Treatise of the Diseases of Women with Child:

‘the vile Imputation of Barrenness, rests almost, solely upon them [i.e. women]’

Or William Salmon in his 1686 blockbuster Systema Medicinale, A Compleat System of Physick, Theoretical and Practical :

‘Here we shall only examine Barrenness, so far as it concerns a Woman alone.’

One of my favourite examples of the ‘nope, definitely not the man, it’s absolutely, definitely the woman who’s got the problem’ assumption is US President George Washington. He and his wife Martha were happily married but “mystified why, year after year, he and Martha could produce no Washington heir”. Obviously as the leader of a great nation, there couldn’t possibly be any question of his virility, so the issue evidently had to lie with Martha.

Except that Martha was a widow, and had given birth to 4 children with her late husband before she married George.

So, er, yeah, the woman with 4 kids is definitely the infertile one…

---

Alright, maybe the male partner might be worth checking out, just to be sure

Whilst the barren women assumption dominated, the notion that the problem might lie with the male partner wasn’t totally inconceivable (no pun intended).

In his study of barrenness in The Hidden Treasures of the Art of Physick (1659) surgeon John Tanner stated that there might be merit in considering male infertility

Before you try these uncertain conclusions upon the Woman, examine the man, and see if the fault be not in him.

The 1668 edition of Lazarus Riverius’s Practice of Physick went further by acknowledging that failure to consider the possibility of male factor could inflict unnecessary treatments on the female partner:

‘diligently consider and inquire, whether Conception and Generation be not hindered by fault of the Man, or any deficiency in him. For in such a Case, It were vainly done to torment the Woman with a multitude of Medicines.

The contribution of sperm quantity and quality to successful conception was recognised even in 1662:

‘the mans Seed, when it is not sufficient in quantity, or fit for Generation; and though a Woman receives it, either there is no Procreation, or its in vain’

And varicoceles had been identified as a possible root cause of male factor infertility as early as 1687

They who have their Testicles varicous are barren, because the Spirits of Generation pass to the Varices, and so leave the Seed unfruitful, being deprived of Spirits’

It’s clear that there was in fact a relatively sophisticated level of understanding of male factor infertility, even in the 17th century — but that there was little appetite to attribute any blame to the male.

---

OK, so how can we test for male factor?

If a man was willing to have his virility challenged, there were a couple of ways of investigating male infertility:

Male vs female fertility blame game

image by Francesco Gallarotti on Unsplash

In 1545 one handy midwifery guide advised that both partners should pee into a pot that had been planted with barley, and whichever seed sprouted first demonstrated the fertility of the person who had watered it.

Or for a more rapid-turnaround test result: both parties would pee on a lettuce leaf, and the person whose urine evaporated from the leaf first was thought to be infertile.

Urine + horticulture — they both sound pretty bulletproof fertility tests, no?

Solo male testing (strap in for this one)

image by Matt Hoffman on Unsplash

But wait, there’s even a fertility test for the blokes in their own right.

Instead of knocking one out in a clinic masturbatorium, yep, you’ve guessed it — it’s pee-in-a-pot time again.

But be prepared, it’s a doozy.

In his 1605 smash hit, The General Practise of Physicke, Christopher Wirtzung suggested this approach to determining a man’s fertility:

‘let him pisse in a pot, and let the urine stand awhile, if wormes grow therein, then is that urine barren’

WTF?!!

Leave your warm piss in a cup and see if any worms start growing? If worms grow in your piss then I think you’ve got more than subfertility going on to worry about!

And let’s face it, the likelihood of worms magically emerging seems somewhat slim (at least, you’d hope so). Therefore the man was guaranteed to pass with flying colours regardless.

Bonus male fertility top tip

image by Sam Truong Dan on Unsplash

Whilst reading up on the history of male infertility, I ended up down some pretty freaky rabbit holes, discovering certain stuff I can never un-see.

And now I’m going to share this delightful fertility sex tip with you too.

Jane Jackson’s recipe book included a fertility enhancing remedy that had to be applied to the male genitalia:

‘Take the braine of a crane and medle it with ganders grease and fox greaseand keepe it in a vessell of silver or of gould and at what time thou wold have knowledge annoynt therewith thy yard and shee shall conceave’.

Right, so kill a crane, mix up its brain with some goose and fox grease, smush it together and smear it on your cock, BOOM. Up the duff.

Suddenly those fertility lubes like Pre-Seed are looking remarkably appealing in comparison…

---

We’ve invented semen analysis! But nah, let’s not bother with it, it’s probably a waste of time

image by Ousa Chea on Unsplash

So in the 1860s, American gynaecologist James Marion Sims is investigating ‘sterile marriages’ and decides to have a quick look at a semen sample under the microscope. And, wait for it…..he can now see ACTUAL sperm with his own eyes! Voila, the semen analysis is born. Examination of sperm count, motility and morphology is now possible. No more peeing on lettuce leaves.

Zoom forward a few years: in 1945 the Family Planning Association (FPA) opens a dedicated seminological centre — Britain’s first purpose-built laboratory for investigating semen samples.

It was established in part specifically to help women, by sparing them from ‘unnecessary operative procedures’ — when it was the husband who was ‘partly or even wholly responsible’ for the couple’s infertility.

Awesome! Finally infertility is treated as a couple’s issue!

Er, not quite.

One medical journal reports the case of a couple who were struggling to conceive, and over the course of 2 years, the woman underwent:

• 2 D&C operations

• a tubal insufflation

• a salpingogram

• an endometrial biopsy

• a host of tablets, injections and vaginal douches

Only after all this invasive treatment was unsuccessful did someone suggest that perhaps her husband’s fertility should be tested.

One simple semen analysis later & the verdict is in.

Not a single sperm was found in the sample. Not one.

Neither in any of the subsequent repeat tests.

Every single procedure the woman endured was thus totally pointless — all because male factor simply wasn’t a priority.

---

Let’s deliberately avoid diagnosing a male factor issue so we don’t hurt the man’s feelings

image by Sydney Sims on Unsplash

Although in theory the new concept of ‘infertile marriage’ gave equal weight to women and men, in practice few English doctors paid the same amount of attention to both partners.

Some men felt so threatened by the prospect of having to take a semen test, that they attempted suicide. Therefore one doctor argued that the risks of upsetting a sensitive man by asking him to undergo a semen test far outweighed those of unwarranted surgery on his wife.

Sometimes it was even the wife who objected to the test ‘either because she is afraid of the effect the knowledge of his infertility may have on their relationship, or because she believes that male infertility cannot be treated successfully and she prefers to live in hope rather than know the truth.’

---

How much progress have we actually made?

Male infertility is a really, really important issue — that simply doesn’t get enough recognition

It’s now the most common reason for couples in the UK to have IVF, according to the latest HFEA data.

And we really, really should be paying more attention.

Last year, an apocalyptic study by the Hebrew University of Jerusalem found that sperm counts in the West have more than halved over the past four decades, and are continuing to decline — but we don’t really understand why, or what to do about it.

Despite so many cutting edge advances in assisted reproductive technology, the way we approach male infertility isn’t really that dissimilar to 150 years ago.

Women are routinely undergoing IVF — even if there’s nothing wrong with their own fertility — because their infertile partners are being ignored by the medical profession.

Leading fertility expert Prof Sheena Lewis — chairwoman of the British Andrology Society — says the lack of focus on male infertility within the health system is an “urgent” problem:

Men are not being looked after properly, not diagnosed, and not cared for.

The woman actually acts as the therapy for the man’s problem. We are giving an invasive procedure to a person who doesn’t need it, in order to treat another person. That doesn’t happen in any other branch of medicine.

A couple with a male factor infertility diagnosis will be referred to a fertility clinic, where they will be treated by a gynaecologist. It’s the male partner who has the medical issue — but yet they’re sent to a specialist in women’s reproductive health.

Dr Jonathan Ramsay, a consultant urologist specialising in male fertility sees many couples who’ve undergone multiple rounds of failed IVF, where the underlying pathology was never identified and treated — rendering the treatment utterly futile.

Which sounds rather like the 1945 case mentioned above, where no one had bothered to look at the man’s sperm until 2 years of harrowing treatment down the line.

Dr Ramsay says:

What gynaecologists don’t do is look at the bloke and say, let’s do some old fashioned doctoring with you. Let’s do a few more tests. A physical examination could reveal a varicocele, for example: a varicose vein in the testicle that can overheat the sperm, yet be eliminated by a quick operation under local anaesthetic.

Or it could be that he’s obese and drinking too much. If that guy loses weight, stops drinking and just does sensible exercise, he may well get over the threshold where she gets pregnant. We need to treat the man and the sperm, ignoring half of the picture is just not sensible.

We saw above that varicoceles had been identified as a cause of male factor infertility in a medical text from 1687 — and yet in 2018 a couple may be referred for ICSI without anyone even bothering to examine the man to see if this might be a treatable issue?

How much unnecessary time, money and heartache might be saved if men were actually acknowledged as more than the sperm donor?

They deserve better. Their partners deserve better. We might have moved on from peeing on lettuce leaves in 2018, but in many ways we haven’t really moved on at all.

---

How you can help & have your say

Thanks so much for reading — all and any feedback is very gratefully received.

I’m currently trying to write a book that challenges the fantasy infertility narrative of endless positivity and happy endings, by sharing real women’s and men’s stories about what it’s really like to struggle with infertility and pregnancy loss. It’s a club that no-one wants to join: but knowing that you’re not alone can provide solace and support in the darkest times.

My goal is to represent as many different perspectives as possible — including the male perspective. If as a couple you’ve experienced infertility or pregnancy loss (regardless of which partner has received the infertility diagnosis, if any)— whether your journey is current or past, whether successful or not — I’d be honoured if you’d consider sharing your story anonymously. There are questionnaires for both the female and male perspective — and I’d love to hear more from the guys!

My interview with The Fertility Podcast

I was deeply honoured to have been invited onto The Fertility Podcast to record an interview about my infertility journey, the importance of finding your tribe for support (from other members of the club no one wants to join), and what I’m hoping to achieve with this book project (and how you can contribute by sharing your story)

The podcast went live today - fittingly on the first day of National Fertility Week , supporting this year’s theme #YouAreNotAlone

Thank you so much to Natalie at The Fertility Podcast for having me on: I really enjoyed our chat, and can’t wait to come back in a few months with updates about all the amazing stories you wonderful people are sharing.

You can listen to the podcast here, or find it on Apple Podcasts, Google Podcasts, Stitcher or Acast

And there are full details of the show notes here: The Fertility Podcast EP 158: The Notebook of Doom

Hope you enjoy! If you want to get in touch about anything in the podcast, just drop me a line, I’d love to hear from you.

Guardian: Do we need a new language for miscarriage?

[ Originally posted on Medium ]

I wrote an article for The Guardian about the language of miscarriage for Baby Loss Awareness Week 2018. I know. The bloody Guardian!! I sent off a pitch obviously not expecting that they would get back to me, let alone accept it — but they did. 

First thought: Holy poo.

Second thought: Don’t mess this up. This is really really important.

---

I decided to write about the language of pregnancy loss, because it’s just so wedded to the notion of failure. Even the term ‘failed pregnancy’ and ‘miscarriage’ suggest blame — as though we didn’t do our job correctly, we didn’t ‘do’ pregnancy right, we dropped the baby. When it’s likely that we’re already desperately questioning if there’s anything we could have done to prevent it; if it happened because of something we did (or didn’t do); if we did something to deserve this; if we’re to blame — the language only serves to exacerbate this.

I only had a 700 word limit (which is NOT very much!) so there’s lots and lots that didn’t make it in — but I’m so very grateful for everyone who contributed to my research (more below) and for everyone who’s continuing the conversation. 

This post is to share some of these incredible contributions —  from both experts I spoke to, and the real women who shared their stories.

This is the article that ran:

And OMG it actually ran in print. Like in a real newspaper with my name and my photo and everything. And it said I was ‘a writer about infertility and pregnancy loss’. Which I guess technically now I’ve written a paid piece for a national newspaper I suppose I am!

(NB: the headline differs between the online and print version — neither was mine, both were written by the subeditor. The online version started as the same headline as in print, but was changed during the day, as they experimented with different copy to generate more clicks.)

OMG that’s me in the paper: The Guardian — Thu 11th Oct 2018

Words and photography by me: The Guardian — Thu 11th Oct 2018

It was also pretty mindblowing to see the article when it was first published front and centre on the main Opinion page (apols for self-indulgence) — but so happy that a piece for Baby Loss Awareness Week was being given such prominence. 

(and incredibly proud that I now have a Guardian contributor’s profile page!)

I am so, so honoured to have been given the opportunity to write about this issue, and I’m thrilled that it generated such a positive response. A number of different charities shared the article: the comments were both heartbreaking to read, and incredibly heartwarming that so many people are speaking out about their experiences of pregnancy and baby loss — because it’s only by talking that we will #BreaktheSilence.

These people were brave enough to share their own experiences, their voices deserve to be heard.

---

Thank you to Tommy’s for sharing the article on Instagram — these women were brave enough to share their stories, and I thank them for making their voices heard:

I miscarried at 13 weeks August 29th: when it was described as “removal of pregnancy tissue” or “evacuation of pregnancy” it made my skin crawl.. it was our baby not just a clinical procedure. We were given excellent care from the support unit but once handed over to the surgical team to have surgical management all compassion was lost sadly.

Absolutely agree people need educating on this! We were told I probably wasn’t pregnant anyway, even though we’d already had a scan with a heartbeat, that it was probably not a ‘real’ pregnancy. I went on to have a D&C, which didn’t remove the baby. I was at home alone when I realised, when I called the EPAU unit they laughed down the phone and said it was probably a clot and could I bring it in in a Tupperware?! This is the only time in my life I have been able to get pregnant and it still stings 5 years later!

I lost my baby 13 years ago and felt so alone, so misunderstood and took a long time heal and made my subsequent pregnancy so stressful because the care just wasn’t available. I’m so relieved that the world is finally talking about these issues and that other women will get better support than I did #BLAW2018

The lost part always makes me angry as well I didn’t lose him, I wasn’t irresponsible: he was my son not my f*****g car keys!!!

Having an MVA (manual vacuum aspiration) for my third miscarriage consistently referred to by the doctor as an ‘abortion’ was surprisingly hard to hear. It’s outdated language that should never be used in a miscarriage situation. I would urge everyone to write to the hospitals in question to highlight anything from badly chosen words/phrases to poor care. Hospitals take complaints seriously and the message is passed to the relevant teams so they can try avoid it for the next poor woman/couple… Please everyone do this!

It was terrible. I had to have two ERPC for one miscarriage as they left “retained products” which were left to “rot” inside me as the consultant said!!! Devastating

I lost my baby at almost 12 weeks and the nurses who looked after me were amazing, not once did they mention trying again (other than saying it would be a possibility) they called my baby, a baby. They spoke with me about my grief and did everything they could to get me the last scan picture we had taken (baby had already passed but it was important for me to have it). On the women’s health unit, when it closes for the day any patients who stay overnight have their care managed by midwives. I couldn’t think of anything more cruel than a woman being looked after by a midwife when she no longer had a baby. The midwife had no compassion for the situation and ignored me most of the night. The doctor I saw the next day was vile! When I cried she was so patronising and told me “I know, I know, it’s almost like grieving..” I kept telling her to stop calling my baby a retained product and in the end I told her to leave. It needs to be dealt with more sensitively.

I lost my boy at 17 weeks last year. They came in to take him and I said I wanted to spend time with him and hold him. I was told something along the lines of ‘what do you want with it, it’s not a full baby yet’.

---

The Miscarriage Association were also kind enough to share the article on Instagram, and again, people were courageous enough to share their own stories:

Although the NHS team who looked after me through two missed miscarriages and MVA procedures were so incredible and lovely the language they have been tutored to use was in my opinion wholly inappropriate “pregnancy tissue” rather than baby. Heartbreaking. I’m so fortunate that I am now pregnant again and in this happy instance they were more than happy to call the baby ‘a baby’ from our six week scan onwards. It doesn’t make sense.

The language around pregnancy loss has to improve. I will never forget, and am still haunted by, the lady who did our scan at 7 weeks and informed us that “this pregnancy does seem to be on its way out”. It haunts me most because she had a trainee with her. And that pregnancy was our much longed-for child.

I get really upset when medical professionals refer to my miscarriage as an abortion. It wasn’t an abortion. Having a miscarriage was not my choice.

I’ve had mine referred too as products of conception too. And spontaneous abortions. Why don’t they call it what it is? MISCARRIAGE. A loss of a BABY. Just really makes going through a loss 100% harder.

This was one of the worst parts of my whole experience. I completely broke down when my anaesthetist finally came to me and said ‘I’m so sorry for your loss’…the only member of staff out of probably 10/12 is dealt with on the day of my surgery that actually acknowledged what we were going through. Heartbreaking.

I was asked have I passed the product yet I said what product you mean my baby that had a heart beat. I had a go at the doctor for the way they worded it.

When we suffered a missed miscarriage of twins 2 years ago I opted for surgical ERPC. During the consent process the junior Doctor asked me “What do you want us to do with the biological matter after the procedure?” As a nurse (unknown to him) I went through the roof at him for his lack of empathy and instructed him to leave my room immediately. I then requested the registrar (female) came to consent me. In my professional capacity I do understand that the terminology was used as we were before the 24 week mark, however as a Mother I was devastated at the loss of my twins 4 weeks apart, not to mention the whole host of emotions I was dealing with. His words will forever haunt me. I wrote a letter of complaint but only received a generic reply. It is time that things change because a baby is a baby from the second you know you’re pregnant regardless of gestation and fetus viability.

Having been told I’d had a “failed pregnancy” and that I needed a removal of the “products of conception” I relate to this so much. I was then made to go and sit in a waiting room full of pregnant women! All I could focus on was the word “failed”, as if I’d failed or my body had failed. It’s truly awful that there is so little compassion when telling a woman her baby has no longer got a heartbeat.

This happened to me in June from an A&E doctor while I was trying to process the already devastating news that I was losing my baby. I understand they have been trained to think clinically but that Product of Conception was my little son/daughter who I had aspirations for and who I couldn’t keep alive

---

Fertility Network UK also shared the article, and there were yet more people sharing their own stories in the comments:

I hate this phrase. Last year I went through an horrendous miscarriage requiring hospitalisation. All the time the Drs keep referring to our baby as a product of conception. Regardless of how far along you are, as an individual that embryo is your baby and part of you. You’d had all these dreams and thoughts about your future life with your baby, and in a heart beat it’s taken away from you. A ‘product of conception’ is not the right thing to say!

I had no idea how common miscarriages are until it happened to me and the nurse just sat there and told me that one in 4 pregnancies end this way. Like it was no big deal. Keep doing what you’re doing, you’re helping so many women feel less alone

The op I had to remove the foetus/ baby from my uterus was referred to as “evacuation of retained products of conception”. Awful

---

I was overwhelmed by the reaction on social media — so sad that so many people had personal experience of this issue, but so happy that people were responding so positively to the article itself, and were comforted by this distress being openly acknowledged.

I was even more overwhelmed, and so very moved, to discover on Saturday that there was a whole section on the Guardian letters page on Sat 13th Oct for readers’ feedback (thanks to being tagged on Instagram and Twitter by two of the people who’d written in!)

I am so very very pleased to have been able to contribute to the debate in this issue:

Letters page from the Guardian — Sat 13th Oct 2018

Thank you to Rosie, Mike and Shirley for taking the time to write in and share their stories

---

There was so, so much I didn’t have room to say — here are some of the highlights of my research that didn’t make it into the finished piece:

Speaking to Ruth Bender-Atik from the Miscarriage Association

The Miscarriage Association are doing phenomenal work to improve the quality of care that patients receive from clinicians when experiencing a miscarriage.

They used to run study days and workshops for healthcare professionals, and now offer learning resources on their website for HCPs that are free and easy to use — including online training videos and good practice guides, such as this one about how to talk to patients and their partners about management of miscarriage:

The Miscarriage Association are also part of the National Bereavement Care Pathway: a collaboration with other charities and with the support of the Department of Health and the All Party Parliamentary Group on Baby Loss.

The objective of the project is to ensure that all bereaved parents are offered equal, high quality, individualised, safe and sensitive care in any experience of pregnancy or baby loss, be that Miscarriage, Termination of Pregnancy for Fetal Anomaly, Stillbirth, Neonatal Death, or Sudden Unexpected Death in Infancy up to 12 months.

It started with a pilot of 11 sites in wave 1, and is now live in 32 site across England, with pathway guidance for professionals on each of the five experiences of pregnancy or baby loss — and have published an interim evaluation of the project after six months live in the initial wave.

Ruth told me that the hospitals who are trying it are enthusiastic, and that she hopes it will become mandatory to adopt the guidelines and training.

Training about sensitive communication with patients really needs to start in medical and nursing colleges — and crucially, for clinicians to be able to deliver great care and act in a caring way, they need to be cared for and supported themselves.

I was thrilled to learn about the NBCP, which is a fantastic step to deliver on-the-ground practical improvements to the emotional support bereaved families receive. It’s easy to say ‘we need more sensitive care’, but this project is actually working to deliver this, which is so encouraging.

---

Speaking to Helen Williams from the University of Birmingham

Helen is a researcher working with the National Centre for Miscarriage Research , leading a research initiative for Tommy’s dedicated to improving miscarriage support for women, partners and family:

Miscarriage isn’t just a physical experience: it is an emotional event both for mum, her partner and those around them. However, a lot of the care given after a miscarriage only focuses on physical recovery, without providing women with the emotional support they need.

We want to better understand the different feelings and ways of coping women experience after miscarriage, so we can find the best way to help those who have suffered loss. We also want to find out about the experiences of those working to care for couples that have miscarried, as well as how employers respond to miscarriages amongst their employees.

Firstly, we are carrying out a large review of other studies on women’s experiences of early miscarriage. But we want to go further, and ask women themselves. At the moment we are working with nurses and midwives to figure out the best way to sensitively approach women about this difficult topic.

The things we learn from this project will help us in training doctors, nurses and midwives to give women and their partners the care they need following loss, both emotional and physical.

More here: ‘The Lived Experiences of Miscarriage’

The project itself is exploring exactly the issues identified in the article, and I’m so thrilled that Tommy’s funding is going into researching delivering emotional, as well as clinical, care. 

Helen said they’re at the very beginning of the project, but that their initial area of focus is going to be on the male experience — because men are so neglected in delivering miscarriage support. Women are more likely to talk about their experience with their friends, but there’s no equivalent forum for men to have a space to be vulnerable and talk about their feelings. The aim is to to formulate or co-design with the participants what a helpful intervention might look like.

I think this is absolutely fantastic, as miscarriage is a bereavement that affects both parents — yet so much of the support is geared around the woman’s needs, with the man’s emotional needs often barely acknowledged. 

Helen and I are going to stay in touch, and I look forward to hearing how the research progresses.

---

Speaking to Julia Bueno, a psychotherapist and counsellor

Julia Bueno is a psychotherapist and counsellor, with a particular interest in supporting lost parenthood: supporting individuals and couples who struggle to conceive, or have experienced a loss during pregnancy or after birth.

Julia was absolutely amazing to talk to — sadly she has personal experience of pregnancy loss, and brings this to bear on the support she provides to those grieving their own losses. She used to run a support group for Fertility Network UK, and now helps to facilitate a monthly support group for the Miscarriage Association. 

Next year she has a book about pregnancy loss coming out, called The Brink of Being — which I can’t wait to read.

She had so much fascinating insight into providing emotional support for miscarriage, but if I had to highlight one key takeout it would be this:

The language of pregnancy loss does have a chance of improving not unless and until we start talking about it more.

Language evolves by playing around and words will get traction once we find a term that fits. Once we start muddling through — and maybe getting it wrong — then we can start to formulate better language and start to get it right.

---

Other people I spoke to

I’m enormously grateful to my amazing consultant Mr Colin Davis — who provided my husband and I with the most phenomenal clinical and emotional care throughout our fertility treatment and miscarriages — for letting me grill him with a barrage of questions, helping me to understand so much more about the clinical terminology around pregnancy loss. 

Massive thank you to Dr Larisa Corda for her time to offer her perspective on the language of pregnancy loss from the clinician’s point of view.

And thank you to the team @ Tommy’s for sharing such useful insight about the incredible work they’re doing.

And most of all, thank you to all the women and men who shared your stories with me — you are warriors, and are making such a difference by talking so openly about your experiences of pregnancy and baby loss.

#YouAreNotAlone and we are #TogetherForChange