My first experience of Baby Loss Awareness Week almost passed me by. It arrived a little over three months after the loss of my son, Harris, and I remember seeing one of our beautiful Edinburgh buildings lit up in pink and blue one night, but I didn’t know why.
Just a few days later, and while going through a second pregnancy loss, I noticed photos of candles appearing on social media. One after another, people lit them up and shared them, each for a baby gone too soon, and then someone lit a candle for my family, for our baby boy. He was part of the wave of light.
It was then that the guilt hit me. I was so busy trying to hold onto another pregnancy, believing that I wouldn’t miscarry again, that I hadn’t created space for my son that night. I frantically searched through my cupboards and drawers for a candle so I could acknowledge that he’d been a part of my life, so I could remind others that he existed, all the while losing another baby.
It’s been three years since that week, and each day, each week and each month since then I’ve been working on being much kinder to myself in those moments, on erasing the shame that so often accompanies grief. It’s taken me a long time, until very recently, in fact, to arrive at a place of acceptance, and of trust that I can and will get through this period in our lives.
Every year, thousands of people in the UK are affected by the loss of a baby. And I’ve learned that Baby Loss Awareness Week isn’t just about the parents. We remember our babies every single day. But what’s powerful about weeks such as this is that they can help to educate those who haven’t experienced the sadness of miscarriage, stillbirth or infant loss, and give them the tools to support the many families who are suffering in silence. It’s also an opportunity for charities and organisations to raise vital funds to ensure that care, research and bereavement support continues to improve. And focusing on those aspects does ease the burden of recalling my own experiences. But my story is one I still feel compelled to keep sharing if only to let one person know that they’re not alone in this.
It was Wednesday 29th June 2016 and I was 16 weeks pregnant with my second child. Waiting for a private scan, I was filled with hope and fear. Hoping that I might give our 18-month-old her ‘big sister’ tee when we got home, but fearing the worst given some of the symptoms I was experiencing.
The sonographer asked if I had any gut feelings. “Boy or girl?” But my only gut feeling was that something was very, very wrong and I just needed to know that our baby was okay.
As I watched the screen it became apparent that our baby wasn’t okay. The little arms and legs we’d seen wriggling around just a few short weeks before seemed lifeless. I stared at the image for what felt like an eternity, at the still and delicate curve of my baby’s back, praying to something, someone, somewhere for a flicker of movement.
A hand covered mine, a kind gesture, and one that no longer needs the words “I’m sorry, I can’t find a heartbeat.”
I still find it hard to articulate how I felt at that moment. The shock and the grief and the fear were competing with each other for my attention. The shock that my body had failed. The grief that my baby had died. The fear that I’d have to give birth. I knew that nothing could bring us back from this.
I delivered our beautiful little boy, Harris, on Thursday 30th June 2016. His special day.
Secondary infertility & recurrent miscarriage
In the months that followed Harris’ birth, we were given no reason for his death. And I recall the pain of not knowing and of wondering what this meant for our future. But I never – not for a second – imagined that this experience would mark the start of one of the most difficult periods in our lives. One which would see us have two early miscarriages and two chemical pregnancies within two years.
Three years on, and I’ve had every recurrent miscarriage test imaginable, met with and been treated by clinics in London and Athens, and a referral to Tommy’s National Centre for Miscarriage Research resulted in the development of a treatment plan for pregnancy based on my private results. So our hope is that, despite having no concrete reason for our losses, we still might be able to bring another baby home someday.
We don’t know what the future holds, but what I am encouraged by is the determination of charities such as Tommy’s and the commitment of those in our local NHS fertility clinic and early pregnancy unit to see us through to a happier ending, or a conclusion that I can at least understand and be at peace with.
Mending my heart
This is my fourth baby loss awareness week. And this year, I’ve decided to take a softer, gentler approach by putting my own emotional needs first.
While awareness weeks such as this can give people the chance to air important views and share valuable stories, it can also be emotionally challenging. During this week, one which will also see us recognise World Mental Health Day, it’s important to be mindful of reading articles and blogs, watching videos and the news. There will be media campaigns, television programmes, remembrance services; each of them a wonderful opportunity to raise awareness and honour the little ones we couldn’t bring home. But it will also be a constant, daily reminder of our own experiences, which can be triggering.
My partner and I made the decision very early on, days after losing Harris in fact, that we would name him and talk about him. I didn’t know then that I would lose four further pregnancies and that’s brought a heaviness into our lives that I still can’t describe, but it hasn’t dampened my spirit for talking, for sharing and for keeping our son’s memory alive, even in the smallest of ways. He and the littlest ones we lost are and always will be a part of us. But I also have to find ways of moving forward. Not ‘moving on’, not forgetting, but I suppose shaping my life in a way that’s manageable, that doesn’t keep me in a place that’s hard to bear.
Over the coming days, in my own way, I’ll take the love I have for my little ones and channel it into making the topic of baby loss more widely understood. I’ve accepted that it’s okay to do as little or as much as I can in the form of awareness-raising, and I’m keen to carry this forward; to keep talking, to keep sharing, but to do this at a slower pace and bring some focus back to other areas of my life.
My gift to myself this week is to self-nurture; to go for long walks, to breathe in the fresh air, to journal as much as I’m able to and to truly feel my feelings, even some of the joy that my memories of Harris bring.
Joy is something I didn’t feel for a long time after losing Harris, but giving birth to him, seeing him and holding him gave me some real moments of happiness in between the sadness. And it’s remembering those moments that mends my heart.
You can follow and connect with Sarah on Instagram @sarahjrobertson.
Many of you will be aware that October is Baby Loss Awareness Month, something very close to my heart. Quite simply put – miscarriage needs to be spoken about, awareness needs to be raised and people need to realise that they’re not on their own. I had no idea until it happened to me just how common it was.
When I started my DefiningMum blog I intended to write my whole story, chapter by chapter. I had it all mapped out but stopped just before this chapter in our story, moving onto other topics in my quest to raise awareness about infertility and donor conception. I’d attempted to write the chapter two or three times but abandoned it to write about an easier topic, one that wasn’t so painful. I see that in doing this I was unknowingly avoiding re-visiting this difficult time.
Just a few months before it happened, my whole ability to have a child had been unexpectedly thrown into question. The Drs weren’t even sure whether I would produce any eggs under IVF stimulation, never-mind an embryo. It was a miracle when we made it to day three transfer, then the ultimate miracle to see my first ever two lines on a pregnancy test. Being a naïve IVF first-timer, I believed the hard part was over. I was pregnant…I’d defied the odds and finally I was going to be a Mum. I felt relief that I no longer had to worry about the potential loss of my genetics – here they were, right inside of me…the perfect mix of mine and Matt’s DNA. Daily pregnancy tests showed text-book line progression – I was on top of the world and in moments alone I would say out-loud to myself over and over the words… “I am pregnant”. My mind had raced forwards and I’d planned everything – the due date, my visions of announcing to wider friends and family, maternity leave and how we’d spend it. I simply couldn’t wait to finally start the rest of our lives, having spent the past year on a constant rollercoaster of emotions. I’d not even remotely considered that things wouldn’t go to plan.
To cut a long story short, things started to go wrong when I felt some pains just before 7 weeks. We went for an earlier scan than planned to find my HCG high but only a pregnancy sac to be seen. Returning a week later, with the hope of seeing progression, it was confirmed that I had suffered a missed miscarriage. I was given a week for it to start ‘naturally’, a heart-wrenching time when I just wanted it to be over, but equally couldn’t bear the thought of losing this pregnancy. With nothing happening I was then booked in for medical management another week later, the most awful experience of my life, which ended in D&C after I wasn’t able to pass my “products of conception” myself. I still absolutely detest that term used by medical professionals to describe our pregnancy. Overall it took three long, painful weeks for the entire experience to end – the absolute lowest point of my life. To this day I still vividly remember lying on the hospital trolley, watching rain pour down the window at Queens Medical Centre, feeling numb as I waited to go through to surgery to have the life that I so desperately wanted to bring into the world removed from me. Life just felt so incredibly cruel.
I was open about our loss with those close to me so I didn’t suffer completely on my own, but even still I remember feeling incredibly lonely. I’m not sure why, but because our loss was at an ‘early’ stage I remember feeling like I needed to just ‘move on’, so as not to dwell too much. Having suffered a blighted ovum, I’d tell myself “there wasn’t even anything in the pregnancy sac”, I think as a way to try to suppress my emotions inside. Every time I felt an overwhelming need to grieve, I’d minimise the loss in my mind by focusing on the fact that it happened before any baby could actually be seen. You’ll notice that even now I refer to it as losing our ‘pregnancy’ rather than ‘baby’, as I’m just not sure I could bring myself to acknowledge that is what we lost. Even recently I still try to suppress the wave of emotion that sometimes rises when I allow myself to think about it too deeply. I remember Matt saying that at the point we lost “the pregnancy” it was simply a group of cells. I know this was his logical, practical way of looking at the situation but I also wonder if this was his own way of coping.
The one time of the year I’ve given myself permission to feel and really allow the tears to fall has been during Baby Loss Awareness Week. Coincidentally and unknowingly at the time, we finally suffered our loss during BLAW on 13 October 2014. I remember seeing the ‘Wave of Light’ on social media just two days after returning home from my D&C. Instantly I felt comfort in seeing others quite literally shining a light on these lives lost far too soon. Not only the loss of life but also the loss of so many hopes and dreams. Lighting my candle, I suddenly knew I wasn’t alone and finally felt like I could do something tangible to recognise and remember the happiness, hope and love I had experienced during my pregnancy.
As it turned out, it was the only pregnancy that I would ever experience with my own eggs. Being completely honest, this then leads me to a whole new level of complex emotion – mainly feelings of guilt for still mourning this loss. I’ve now got everything I’ve always wanted in my girls and couldn’t love them anymore, yet I somehow feel guilty for still hurting so deeply over something that happened five years ago. Without this loss, they wouldn’t exist…something that is completely unimaginable to me – the whole situation is a complete mindf**k!
I know my example probably isn’t the healthiest way to deal with grief, but it’s honest, raw and will probably hit a nerve with some of you. It’s a problem I believe was exacerbated by my infertility – it literally paralysed my grief as I tried to block it out completely, feeling the only way to lessen the pain was to move forward and try again. To just have the strength to get back on the IVF rollercoaster I felt the need to try and forget about what had happened. Sub-consciously I now see that I was layering up my grief, something that no doubt impacted my mental health. Even now as I write this I can feel tears pricking at my eyes, ready to spill out as we near the poignant wave of light.
If there’s one thing I’ve learned since starting DefiningMum it’s the power that can be harnessed by sharing. Talking about this topic is so desperately needed, I know now that I needed to let it out and so many others need to hear honest accounts of the grief felt from loss, intertwined with infertility grief. That’s why during Baby Loss Awareness Week 2019 I’ll be dedicating my platform to sharing stories from a group of inspirational women who have all tragically suffered loss. Every day from 9-15 October I’ll be sharing a different guest blog, each with heartfelt personal experiences. I’ll also be sharing Instagram accounts to connect with as part of a Fertility Support Saturday special – if you’d like to take part please let me know. I’d like to thank each and every one of you for helping me to break the silence and open up conversations about this tragic reality for so many of us. Let’s show those who are suffering that they aren’t alone.
I’ve had a bee in my bonnet recently, ever since reading some highly insensitive, misinformed comments. The first in response to a fellow blogger’s IVF update post, followed by some ignorant comments in response to a celebrity couple announcing the start of their IVF journey. Reading them left me speechless, but have now inspired this post which (as it’s mostly a lack of understanding that can cause hurtful comments) will hopefully educate a few people along the way!
Some say IVF is a choice…we can choose whether or not we have treatment, that we could “just adopt” or live a life without children. Unbelievably, some even say that there is some divine intervention at play, meaning we weren’t actually meant to be parents. What utter bull🤬!! Sadly, there is no rhyme or reason, we are just unlucky.
IVF is NOT simply a choice. Not a luxury. Not an opportunity to try for a ‘designer baby’. IVF is a treatment for infertility – a disease of the reproductive system recognised by the WHO. It isn’t just an ‘elective procedure’ as some workplaces consider it. As many as 1 in 6 couples are dealing with infertility in the UK, often in silence.
What people with this view haven’t considered is that this implied ‘choice’ becomes impossible as the drive to become a parent cannot just be ‘switched off’. We’ve evolved to have a primal instinct to reproduce, a driver engrained so deeply within our brains and society that our emotions don’t allow us to simply “just move on”. When we are told we aren’t able to reproduce naturally, it’s devastating, and so we look for something…anything… that can help. Thank goodness we live in a generation where we are able to have a chance at treatment to overcome infertility.
When a couple undergoes IVF or other medical treatments to help them get pregnant, it needs to be understood that this isn’t entered into happily or by ‘choice’. We are simply doing whatever we can to become parents, something that can sometimes sadly be taken for granted by those who have no trouble conceiving.
Some have no idea how much we wish we could just have sex (at no cost!) and conceive without the emotional, physical and financial turmoil that infertility can bring often with a detrimental impact on our mental health.
The celebrity couple slated for sharing their story I would guess aren’t doing IVF “just for a publicity stunt”, they’re most likely (like many of us) devastated that they can’t conceive naturally. They aren’t airing their dirty laundry in public…we should be grateful to them for speaking out, as by doing so they help many of us feel less alone.
Please THINK about your words and how they might impact others. Those experiencing infertility shouldn’t have to face the comments I read in complete horror this past week. Empathy is so important in all aspects of life – put yourself in others shoes, and if you still can’t understand, maybe it’s better to just say nothing at all.
Infertility grief IS real. It wasn’t until I listened to @janarupnowlpc that I truly acknowledged this – it validated everything I’d felt.
Many of us have come across someone (usually someone lucky enough not to have experienced infertility) who shows a complete lack of understanding and empathy. They’re unable to recognise the magnitude of what you are feeling because the loss isn’t visible & tangible. It made me feel as though my feelings were an over-reaction, that I wasn’t normal for hurting as deeply as I did.
But my feelings were real. It is something Jana calls “compounded grief”, layers of grief, often not dealt with as we plough on through another month of TTC, another IVF cycle, another early miscarriage without taking time to heal. We don’t stop to properly grieve and heal because, by standing still, we are getting no closer to the one thing that could begin to heal our broken hearts.
I’ve shared in the images above some of the losses I’d felt. I know there are many more – so please open up & share with me. There’s nothing tangible to show for these losses, no designated time to grieve. Layer upon layer, each devastation shaped my infertility – a significant period of my life dominated by the emotion of #grief. It was only recently I recognised this. I now know that I wasn’t overreacting when I was sobbing uncontrollably, feeling disconnected from the world around me or re-evaluating the meaning of my life – I was grieving for a child that never was.
I wanted to share this to show you that it’s ok to feel this way – to help you recognise it & begin to process it. Ask for help if you need to, talk it out – doing so certainly isn’t weak.
Don’t let someone who tells you to “just relax” or says “at least you can get pregnant” belittle any feelings you have. You can acknowledge it, feel it, and don’t beat yourself up for having days where you struggle – you are experiencing grief…but you can get through this. In Jana’s words “You have to feel it to heal it. Give yourself permission to grieve, to feel the loss, talk about it with others, and cry out the pain.” #youarenotalone
I understand just how hard Mother’s Day is; without a doubt it’s one of the most difficult times of the year for those experiencing fertility struggles and suffering loss. So much emphasis is put on the one thing that we want more than anything – it is literally EVERYWHERE! Even now, I still wince at the adverts, knowing how I’d felt a few years ago, as they talk about the sacrifices that Mum’s make and how special all Mums truly are. It’s right that Mums are celebrated – they are wonderful – but don’t forget that YOU are also all of these things.
Whilst the world is celebrating Mothers on this day, and you may be honouring your own, you must also not forget that YOU should be commended too. As we celebrate the unconditional love and the sacrifices Mothers make, remember that you are already making countless sacrifices every day, just to bring life into the world. Physical sacrifices, financial, lifestyle changes, and so many complex emotions – you are already showing the very meaning of unconditional love and selflessness. YOU are Mums-in-the-making, something that should also be recognised – this post is a reminder of just how special YOU are on this day too. Just think how lucky these future children are going to be…having parents who sacrificed so much just to bring them into the world.
It may not happen in the way you originally thought, but don’t lose hope – it can happen. I’d never considered that my children wouldn’t be genetically related to me and I’ve come to realise that it doesn’t matter one bit – not sharing DNA doesn’t make me any less of a Mother to my girls. Genetics are irrelevant when it comes to being a Mum, there is SO much more to it and I know that I am just as special and important as all the other Mums out there.
So, instead of posting ‘survival tips’ I wanted to show maybe how you could approach the day with a different mindset and perspective. Look after yourself – go for a long walk with a loved one, avoid triggering social media, do things that make you happy. Ultimately, remember not to lose hope and praise yourself on this day – you are already sacrificing yourself for your child, you’re already mothering… and that is special.