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MumsnetGuestPosts (MNHQ) Wed 09-Oct-19 13:49:57

Guest post: ‘This Baby Loss Awareness Week I urge you to have a look at the new Tell Me Why campaign’

Today marks the start of Baby Loss Awareness Week. Blogger Jennie Agg talks about her search for answers and the importance of Tommy’s Tell Me Why campaign

Jennie Agg

The Uterus Monologues

Posted on: Wed 09-Oct-19 13:49:57

(22 comments )

Lead photo

There are many questions that compete for space in your head, but ‘why’ is the most urgent of all.

Have you ever had one of those mind-bending conversations, the kind you can only really have with a small child?

‘Why are there clouds in the sky?’ Small Child asks.

‘Well…’ You rack your tired brain, dusting down factoids filed away under Year 8 Geography, before mumbling something about rain and water droplet evaporation.

Small Child considers this for a moment. ‘But why?’

And on it goes – But why? But why? – until you simply don’t have another answer for them. At least, not without consulting A Brief History Of Time.

This, essentially, is what happens to your brain after you lose a baby. It short-circuits to classic six-year-old brain: But why?

But why. But why. But why.

And none of the grown-ups can answer you. Not the sonographer. Not your GP. Not the midwives. Not even that specialist you see, when one miscarriage turns into two, into three, into four. Why did this happen? And why does this keep happening?

You may as well have asked them: Why are there fish, or why is a colour a colour?

After a miscarriage or any other kind of pregnancy loss – after you walk into a scanning room pregnant and walk out 20 minutes later, unceremoniously un-pregnant, with a clutch of leaflets written in careful medicalese, but which ultimately boil down to ‘what to do about your dead baby’ – there are many questions which compete for space in your head: Why didn’t anyone warn me? Why had no one told me this kind of grief could hurt so much?

Why don’t we talk about this more?

‘Why’ alone is the most urgent of all. I’ve had four miscarriages now and, as yet, no one can give me a medical explanation as to why – and this is also the case for 71% of women who lose a child during pregnancy or a premature birth, according to a recent survey by the charity Tommy’s.

We have been tested at one of the NHS’s specialist recurrent miscarriage clinics and, so far, everything has come back ‘normal’. My blood clots normally. The structure of my womb seems fine. After our fourth loss, we were able to have the embryo tested, which did reveal a chromosomal abnormality – a non-inherited problem called a triploidy. It essentially means the baby had three sets of chromosomes, rather than two. It is supposedly completely random. One cause is an egg being fertilised by two sperm, rather than one.

Only with properly funded, prioritised pregnancy research is there a hope of ever answering the question that haunts me, and thousands like me, every day


However, our doctors still cannot tell us for certain that this is the only reason for the miscarriage. Or that I won’t miscarry again, even with a healthy embryo.

The trouble with ‘why’ is that it causes a black hole in your brain. Without answers, the creeping black tentacles of the question “Why?” worm their way in and around. They blot out logic and common sense. You begin to question everything. Was it because of the glass of wine I had before I knew I was pregnant? Because I got my nails done? Because I caught a cold? Did I exercise too much… or not enough? Because I ‘jinxed it’ by telling people before 12 weeks? Or because I was too circumspect, convinced something would go wrong?

After all, if no one can tell you why, then why not?

There is also a guilt-edged pressure that you should somehow be able to find answers for yourself. The NHS can’t fix it, but maybe that private doctor could, with the office lined with photos of ‘miracle’ babies? You are then wide open and vulnerable to experimental tests and treatments and peddlers of fertility diets and over-priced supplements.

It’s exhausting. I am a journalist, specialising in health, and sometimes the pressure to know what to do threatens to capsize me. There is a nasty little voice that creeps in, telling me that if only I tried harder, or were more deserving of a baby, if I were a better person, a better wife, better at my job I’d have found the answers by now.

Unfortunately, you could be Woodward, Bernstein, the presenters of the Today programme and Jeremy Paxman all rolled into one, and still only elicit perfunctory and evasive answers when it comes to miscarriage. ‘It’s just one of those things.’ ‘We don’t know why it happens sometimes.’ ‘It’s Nature’s way.’

But some experts, doctors and researchers believe this kind of nihilism is no longer good enough. And this Baby Loss Awareness Week I urge you to have a look at the new Tell Me Why campaign from Tommy’s, the baby charity, calling for more funding into research into the causes of miscarriage, stillbirth and preterm birth.

Only with properly funded, prioritised pregnancy research is there a hope of ever answering the question that haunts me – and thousands like me – every day. Questions that accost us at every turn, in every café, on every tube carriage, at every christening or birthday party:

Why is she still pregnant while I am not?

Why is their baby over there, breathing, smiling and squishing raisins into its left nostril, while mine is not?

Why?

You can read Jennie’s blog, about life after recurrent miscarriage and trying for a baby, and find her on Instagram or Twitter

By Jennie Agg

Twitter: @UterusMonologue

MrsMGE Wed 09-Oct-19 16:45:35

Thanks, MN. I'll kick-start the discussion because no one else has as of yet, and I am actively celebrating BLAW, and feel there is so much that needs to be done to save babies lives and help us, bereaved parents.

I know there's been a report done on mental health and bereavement support, does anyone know how we can contribute to this? I am truly amazed that no one has approached MN posters to comment. I didn't know about this report until it's been published, and my MC took place this year - surely we are the crowd that should know about this?

Also, how can we, the parents, get involved in the Tell Me Why campaign? Any specifics per country, please? Many thanks.

sheshootssheimplores Wed 09-Oct-19 17:39:52

I’ve had three miscarriages and a TFMR and the whole thing haunts me. I was lucky enough to have two children but my god I wouldn’t wish the heartbreak that is pregnancy loss on my worst enemy.

Dancingbea Wed 09-Oct-19 21:44:40

So brave and eloquent. Thank you for sharing.

Weatherwaxed Wed 09-Oct-19 22:04:55

Why is the worst of feelings and I don't think it will ever go away.

Onedaymyluckwillchange Wed 09-Oct-19 22:36:41

Recurrent loss and still no answers. Going over and over and over, every single day asking myself why? What is wrong? Why me?

Weatherwaxed Thu 10-Oct-19 09:11:28

There must be more people interested in this topic. Maybe you all don't know what to say or ask?
I've seen all sorts of pregnancy/baby groups celebrate BLAW this week. It's everywhere. Are people scared to ask or comment on here?
BLAW exists for us to remember and celebrate our babies, but also for those outside the loss community to become aware. To learn. Loss parents live with loss everyday. Every one else needs to learn from BLAW.

TwittleBee Thu 10-Oct-19 13:56:34

This totally resonates with me. Losing my baby at 5 days old due to sepsis but no one can tell me how comes he got an infection, what the infection was or why they failed to spot it quick enough before it developed into sepsis.

And no one is able to reassure me it wont happen again.

The same goes for my previous MCs too.

I have had 0 support from the NHS for counselling - in fact my usual mental health team discharged me because they would not deal with me (despite my acute anxiety disorder and history of suicide attempts) because Baby Loss is out of their remit.

Starlive23 Thu 10-Oct-19 14:13:20

When I was lucky enough to have a successful pregnancy after two miscarriages I developed severe pre and postnatal OCD. Was convinced something would go wrong as it had before and after finally self referring I got to see a counsellor specialising in OCD. She asked me why I hadn't had counselling after the previous losses. My answer was my doctor never even suggested it. Just told me it was bad luck and to try again.

You go from being a part of something amazing, a whole future blotted out in the blink of an eye and suddenly, no, you aren't going to be a parent. Bad luck. Try again.

Tommy's research is invaluable and should be better funded and made more accessible.

Lozz22 Thu 10-Oct-19 15:12:18

Had my 4th miscarriage last week. TTC for 15 years with my ex husband. Met someone new and within a year I've been pregnant 4 times and lost them all. The previous 3 all before or around 6 weeks. This last one was the hardest, I saw my tiny little Bean on the ultrasound scan and carried further on then I have previously done. I'm now awaiting a referral to the Leeds recurrent miscarriage clinic to see why it keeps happening. So far I've had it's just one of those things!! No it bloody isn't!!

j3mz Thu 10-Oct-19 16:29:23

I had no idea about the campaign until reading this. It's been 4 years since my stillbirth at 37+4 weeks and I'm not over it . I can't talk to anyone about it so it just gets bottled up inside, no one knows how to deal with the subject so I have to just get on with life .
I had very little help once I left the hospital with my memory box instead of my baby the mental health team came round the next day but if course I couldn't face anyone I couldn't even face my own thoughts I told them was fine I couldn't even open the door to do it , they left and never checked in me again .
God I'm crying writing this the pain is still very raw as the day it happened. I had no one not even my mom . I still have the "why" questions that no one can answer . Few months after it happened I found out I had prenious anaemia (excuse the spelling pretty sure that's wrong) but it's a b12 deficiency and only through my own research I found out that it can cause miscarriage and stillbirth and placental abruption which is what happened to me was complete and concealed so my poor baby had no chance and I lost over 2 and a half liters of blood but still my consultant won't confirm this is the reason but I would put my life in it , it was!

Thank you for reading sorry if I upset anyone I would just love to be a support and receive support for this but it like ,where do you go. You only hear about it on tv if it's happened to a famous person they get all the support in the world and then we hear no more.
I will be looking into this campaign . Thank you for sharing

Starlive23 Thu 10-Oct-19 16:53:46

@j3mz Your story is absolutely harrowing, you are so very brave to share. You shouldn't be shamed into keeping quiet. Although my experience of loss was of course so very different from yours I felt the same sense of having to keep quiet as it's somehow a taboo subject. Although this subject is upsetting it shouldn't be swept under the rug like it's a dirty secret to be kept from 'normal' 'happy' people. It's fucked and it needs to be changed. We need to be able to support each other as a society when we are at our most vulnerable.

DontBuyANewMumCashmere Thu 10-Oct-19 16:57:15

flowers for the posters who have had stillbirths or lost living babies.
The world is unbearably cruel sometimes.

After having one child already, I had 4 MCs over about 18m and it was so sad and unexpected. Luckily they were all early on but they were still heartbreaking.
I was so fortunate to have had one child already, she kept me very sane.

I was lucky to be diagnosed with a very minor hormonal complaint and within a few months I was successfully pregnant and now have a 9wo baby.

I have been lucky to have support around me and several close friends have also had MCs or infertility problems so at least I was able to talk about it.

flowers and cake to anyone going through it currently, I share your pain and I hope others can have future happiness.

Weatherwaxed Thu 10-Oct-19 17:05:36

@j3mz where did you find the info on pernicious anemia and stillbirth? I am always looking for a reason for my son's death.
Have you tried talking to Sands about your baby? They have a support telephone number, forums and some local groups do face to face support meetings.

j3mz Thu 10-Oct-19 18:06:38

@starlive23 thank you I don't feel brave but felt this is a safe place .you don't come across them much. I apologise if it is jumbled and not making sense by know when you just have a lot to say it don't want to write an essay.

@weatherwaxed I went to the doctors because I was getting (tmi sorry) white stringy stuff in my mouth after brushing my teeth so she sent me for test which confirmed I had it and I just googled "can b12 deficiency cause placental abruption and there it was in black and white.there's also a couple of fb groups with well informed people on there I've learnt so much from them!
As for sands I couldn't handle talking on the phone to anyone , I really wanted to go to the groups but in my area they were all in the evening at 7:30 and I had 2 older kids so couldn't attend sad .
I did the forums and was able to tell my story but after a while it became over whelming new people were joining everyday I couldn't help feeling for everyone and all the babies it was happening too much .I had to step away because I'm a thinker couldn't accept how often it was..
We're all still looking for answers you are not alone there the hard thing is accepting we may never find the answer. Xx

kasmac Thu 10-Oct-19 18:54:00

I had a miscarriage at 6 weeks.......then I started using the duo fertility monitor and they identified I was having early losses........I then realised I had had years of very early losses, too early to be classed a miscarriage apparently and it wasn’t just slightly irregular cycles due to PCOS as had been advised by my GP! Duo fertility team got me to start taking early tests and on day 26 of my cycle I went to my GP with a faint line (I think the gp thought I was nuts) - got to see a consultant privately the next day, was told to take 75mg aspirin a day throughout my pregnancy and we now have a 7 year old! I was 42 when she was born too! I have a friend who has an 8 year old, who was born after many miscarriages too, with the use of aspirin. I was told My losses were unexplained.
Talk to your GP x

Weatherwaxed Thu 10-Oct-19 20:34:17

@j3mz thanks for the info. Thinking on it, i had blood tests at the time and everything came back normal so i doubt i had anemia of any sort.
The sands forums are tough i agree. I've never used the help line and sadly the support groups can't be available at all times. Thank you for replying to me. It sucks to know about thus stuff.

j3mz Thu 10-Oct-19 21:20:29

@weatherwaxed that's the thing so did I even an extra one because of how I was feeling faint all the time but b12 is not checked only iron . My pregnancy after that my consultant checked me for every last thing they also found out I was protein s deficient (whatever that is she had to look it up while I was there) . I'm not trying to make you think maybe it was the same for you I had other things going on as well that I should have pushed for more help with but then I was getting regular scans and no issues was found . I've had 2 babies since and my consultant team were brilliant I had so much help and support from them.
How long has it been for you? It does suck real bad to know and go through this . If your struggling with the forums as well my inbox is always open if be happy to listen

Onceuponatimethen Thu 10-Oct-19 23:31:55

This really resonates with me and thank you for the wonderfully written and personal guest post.

I feel there are so many factors we could be dealing with to prevent pregnancy losses and one of these is optimum management of all women with under active thyroid who are ttc, so that all women receive the message that tsh should be as close to 2 as possible for ttc. I was in a support group for women with thyroid issues and many of us had a history of miscarriage so I think this is just one of the under researched factors

InkyFingersInkyFace Fri 11-Oct-19 21:03:21

I lost my baby 11 years ago this December coming.

He was a late missed miscarriage; we don't even know if he was definitely a boy, I would have loved someone to have told me.

My body wouldn't do it's job alone, I had a d&c under general, and I was very poorly afterwards for a while.

I went into complete shock and tuned the world out. I had not long separated from my husband who hadn't wanted kids fullstop. I was single mother to a 15 month old. No family nearby. I had my baby cremated.

The hospital gave me absolutely no support. I kept ringing them and asking for the number for a charity I could talk you to help me grieve, and the matron on the ward I'd been in repeatedly hung up on me. She was very rude to me during my stay and rude during every phonecall. I was too scared of her and too young and naive to do anything about her.

During the course of that following year I lost shedloads of weight, developed severe M.E after a serious virus, my little one went to stay with family and I was nearly sectioned in the autumn.

It has taken me over a decade to try and rebuild my life. I have chronic mental health problems, I've a shitty list of physical disabilities which aren't helped by the mental health problems, and I just blank over my losses (there were others after this first one).

So when friends or associates lose babies now, I do feel sad, I always cry to say something to them (because people treated me like a leper and left me alone to deal with my loss, it was horrid) but it sort of washes over me. Because that's the coping mechanism I had to develop because I couldn't get help to process my grief.

I just hope that a decade on from then, that others can start getting the help they need when they suffer any kind of loss.

lookingfortreasure Fri 11-Oct-19 22:19:29

The thing is I didn't tell anybody about my MC because I couldn't talk about it. I was just too upset, too drained. My parents know, because I needed to go to A&E and I needed someone to have DS. But they seemed to think it happens that day then it's finished, but it went on physically for over 2 weeks then I had a D&C. I was so low for months, physically anaemic and down. I still tear up if I do talk about it now a year later. It's a hard thing to talk about for me. When I saw people at the time they'd ask how are you ? I'd say ok, I've been a bit under the weather. I just felt to blurt out I'm having a miscarriage now to acquaintances would be upsetting for us both. Is that stigma, I'm not really comfortable with over sharing, maybe I've been brought up to be too British stiff upper lip. Like when a work colleague tells me she's on her period just randomly why?

ClaraSais Sat 12-Oct-19 08:31:36

My middle child would have been born this week - I still ask myself why? So painful. Thank you for opening up about your experiences x

Weatherwaxed Sat 12-Oct-19 09:58:22

@j3mz my lad would have been 5 in the summer. I think about asking my GP to go through the post mortem report with me so i understand more, but I'm not sure if I'm up to ut.
Thanks for the offer of chatting. I am generally very stoic and ok with stuff.
Now to get ready and go to our local BLAW memorial event.

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