Baby Loss Awareness Week 2018

Baby Loss Awareness Week runs from 9–15 October 2018. It provides an opportunity:

The charities leading Baby Loss Awareness Week provide support to anyone affected by pregnancy loss and the death of a baby, and work with health professionals and services to improve care. Together we are committed to raising awareness of pregnancy and baby loss, which affects thousands of families every year in the UK.

Baby Loss Awareness pins are available in limited quantities from the ICP Support shop.

You can find out more at Baby Loss Awareness Week.

Below, two bereaved parents – Jenny Chambers and Kate Woodward – talk about their experiences of stillbirth.

Jenny Chambers, CEO ICP Support

A couple of weeks ago, when I was with a research participant, she suddenly asked me if I had sons or daughters. We’d been talking about the fact that she was having a boy and I just didn’t see the question coming. I should have. I’m normally prepared for it, because I often share that I’ve had the same condition as the women I recruit to research (intrahepatic cholestasis of pregnancy – ICP). But I wasn’t that day, and as soon as I was asked my stomach lurched. My heart started thumping wildly in my chest. I seemed to lose all sense of where I was and for a nanosecond I was back in that labour room giving birth to my stillborn daughter, Victoria. I hesitated for a moment as I struggled to get it all together and then replied, ‘No, no daughters’.

But oh, how that hurt. How guilty it made me feel that I was denying my girls (I’ve had two stillbirths) and how deeply, deeply sad I felt that after 32 years I was still (this time for all the right reasons) not able to talk about all of my children.

Not that talking about the girls is something that I want or need to do every day. Thirty-two years is a long time. A lot of ‘mending’ has taken place and life is good. If you’d told me back then that I’d be working in research in an obstetric unit and seeing lots of pregnant women and sometimes even being at births I would have looked at you incredulously and wondered what planet you had stepped off from. Yet here I am working in that obstetric unit and loving being part of the research into the very complex condition that is ICP.

But as I found on that day, and have done on others, no matter how long ago something happened sometimes – when you least expect it – time can disappear and for a brief moment you are back at the event – good or bad – and it feels like it’s happening in the present. You can smell the smells, hear the sounds and feel the emotions of what happened. It makes no difference whether it was two years, 22 years, 32 years or longer. It can still be there in all its Technicolor glory, and sometimes you still want to talk about it.

Baby Loss Awareness Week is so helpful: it gives a voice to parents who have experienced lossAnd that’s why I think Baby Loss Awareness Week is so helpful: it gives a voice to parents who have experienced loss (no matter how many years ago) before, during or after pregnancy. Thirty-two years ago that voice wasn’t allowed. Although Sands (Stillbirth and Neonatal Death Charity) had started their incredibly important work of changing care for bereaved parents, the public perception of stillbirth at that time was still that one simply didn’t talk about it. You were granted a certain amount of time (weeks!) to grieve and then that was it; you were expected to be ‘over it’. Thank goodness it’s not like that now, and because of the work of Sands and other organisations, Baby Loss Awareness Week is an opportunity for parents like me to be able to share with you my thoughts all these years later.

I believe that the death of a baby is not something that you ever get over. It stays with you until you yourself die.And what I want to share with you and hope that you will ‘get’ is that I believe that the death of a baby is not something that you ever get over. It stays with you until you yourself die. Sure, it gets easier to cope with, because that awful pain of grief doesn’t stay with you 24/7 forever – no one can survive that – but it never completely goes and I don’t think your heart is ever quite the same. It has a baby-shaped hole in it that cannot be filled and never will be, no matter how many years go by. Which is why sometimes the grief can seem as fresh as the day it first happened, albeit this doesn’t last long, and why it’s important to remember that long-ago bereaved parents can still have their ‘moments’.

At least, that’s my experience of baby loss. Maybe you too have experienced the death of a baby and don’t feel like I do, but that’s okay because grief is something that we all experience differently – we all have our own story of loss that is relevant to us and it may not be the same as someone else’s. Or maybe you don’t feel the need to talk about what happened to you and you never will. I will light a candle on the 15th because I want to join with other bereaved parents and show my support.I get that too. As I write this I know that I don’t feel the need to light a candle these days (I used to in the early years) but I will light a candle on the 15th because I want to join with other bereaved parents and show my support. What’s important is that those people who do want to talk, to remember, to light a candle during the Wave of Light on 15 October have the choice to do so and that whatever they choose to do they are supported with love and respect from those around them. After all this time I am very grateful that this choice exists; it’s so important that it does – in fact, it’s more than important because for some parents it’s a lifeline.

So, if you can (and they want it) be ready to be there for that person you know who has experienced loss, regardless of whether it has only just happened or took place many years ago. There are no words you need to say – you just need to be there. And never underestimate what a difference that can make, even if you can’t comprehend why and how. Just know from the baby-shaped holes in my heart that it does.

Jenny

For my girls, Victoria (32 on 1 November 2018) and Olivia (27)

 

Kate Woodward

Kate Woodward (aka The Muddled Mum) has not only been affected by ICP, but has also experienced baby loss through recurrent miscarriages. Kate has always spoken publicly about her pregnancies and we asked her to share her thoughts about what she’s been through to mark Baby Loss Awareness Week and to highlight that women with ICP may also suffer other pregnancy complications and losses not associated with the condition.

Kate writes:

‘Mummy, is there a baby in your tummy?’

This is a question my beautiful sunshine girl asks me at least once a week. I suppose many young children yearn for a sibling. However, our girl’s obsession with my womb started 18 months ago, when we told her some very exciting news: she was going to be a big sister. If you ask her, she will tell you that she is a big sister. Then she will lead you to the garden and show you where her brother George and sister Primrose grow. We said goodbye too soon to both of her siblings. George and Primrose each have their own beautiful acer tree: beautiful throughout the year and growing tall in their stead.

I grew up surrounded by pregnancy. I have four siblings and always knew motherhood was in my future. Of course it would be easy for me – I’m one of five! How could it not be? So when I finally met the man of my dreams, we wasted no time in starting our family. And to our great surprise, I fell pregnant easily.

That is the only part of pregnancy that is easy for me.

Our sunshine girl’s pregnancy started off with extreme sickness – also known as hyperemesis gravidarum. Constant vomiting and nausea saw me bedridden for weeks. I could barely stand without having to run for the bathroom. As the sickness started to ease, I started to notice another unpleasant symptom: itching. I remember mentioning to my midwife at 15 weeks that my hands and feet were really itchy. In truth, my back and arms were driving me a bit bananas too. Thankfully, my midwife was really on the ball and knew to test for ICP. A couple of days later I got an urgent call: my bile acid levels were severe. For the rest of my pregnancy (more than 20 weeks!) I itched. At times it was so bad my eyeballs itched. I scratched until I bled. But worse than that, I had a deep-seated terror that my baby wouldn’t make it. Severe ICP is associated with an increased risk of stillbirth. No mother wants to hear that. Living with that knowledge for such a long time, and knowing my results started off severe, meant that her pregnancy was torture. I just wanted my baby girl here in my arms.I just wanted my baby girl here in my arms.

Thank goodness she made it through OK. At 37+1 weeks I had a very quick induced labour and welcomed my gorgeous girl. I will never forget those first moments with her in my arms. The relief. She is here! She is OK! Little did I know that her pregnancy was not the end of our difficult journey to parenthood.

For a long time I was not ready to be pregnant again. I was so traumatised by the prolonged anxiety and fears that my girl wouldn’t make it. I didn’t want to face pregnancy again. But as she got older, the desire to have a sibling for her outgrew my fear. I knew that the chance of developing ICP again was very high. In fact, my bile acids have never returned to normal (itching is my new normal). If I was going to cope with the pregnancy, I knew that I needed to adjust my mindset. We worked hard to go into the pregnancy, full of hope and the knowledge that our baby would make it. We pushed fears aside. We told ourselves it would be OK. We reminded ourselves that the risk of stillbirth is very low and only when bile acids are in the 100s. We let ourselves become enveloped in joy and love the moment we saw two lines on the pregnancy test.

When I started bleeding a little before 8 weeks I wasn’t too worried. I had bled in my first pregnancy. I was still incredibly sick and very itchy. All the signs were that I was very pregnant. We had an emergency scan and the sonographer was very pleased to announce that the baby had a heartbeat. It was a viable pregnancy! Then they told me my dates must be off though, because the baby was smaller than they expected – 6.3 mm. For some reason, I knew in that moment that we would lose the baby. Everyone around me seemed happy, but I knew. Five days later, I woke early in the morning and felt contractions. They didn’t hurt as much as when I had my girl, but the sensation was the same. Everything I read told me that at this stage you wouldn’t see a baby. If I miscarried now, there would be nothing. My body seems to like breaking the rules.My body seems to like breaking the rules, because moments later, in the palm of my hand was my perfect little baby. Tiny. But unmistakably a baby.

What on the Earth are you meant to do with a baby so small it’s not technically even a baby yet? A quick Google said that I could flush it down the toilet. My stomach lurched at the thought. I panicked that the baby was cold. How could I keep him warm? Yes, he was a boy, that’s what my body told me. What was his name? Why had this happened? I remember looking very closely to make sure he was dead. His heart had been beating. Was I sure it had stopped? This may sound so ludicrous but miscarriage isn’t a topic that we discuss. I didn’t know what to think or do. The shock of losing him was felt throughout my entire being. He was loved beyond measure and he was gone.I felt a great chasm open up. I had made space for him in my heart. It felt like suddenly there was an empty chair. He was loved beyond measure and he was gone. George was gone.

Since then, I have been pregnant more times than I like to count. Many of these pregnancies were lost very early on. Those losses cut deep. I wasn’t even given the chance to be happy and excited before I was engulfed by grief. Then, earlier this year, we had another pregnancy that developed further along – far enough to have an ultrasound. I was hopeless and hopeful in equal measure. Sure it would end. Sure it wouldn’t. When the sonographer happily announced that the baby had a heartbeat and measured 6.3 mm my world turned inward. Not again. But it was happening again. Four days later we had another scan after a big bleed. This time the room was silent as the sonographer scanned every inch of my pelvis. I knew what he would say. He was just trying desperately hard to find a baby that was alive.

‘I’m sorry. There is no heartbeat.’

Those words haunt me. The feeling of claustrophobia as though the world had just become incredibly small. Hearing a woman screaming – a primal scream – and then realising the sound was emanating from me. That scream silently rings out most evenings. I can’t fill the house with that noise, so it fills my head and my heart. My heart is torn asunder. My lost loves. I miss them all. George, Meadow, Wallace, Winnie, Star and Primrose Hope.

Just ride the waves and reach out for help anytime you need it.If you have experienced pregnancy loss, please know that it is OK to cry, to grieve, to talk, to be silent, to laugh, to smile, to live, to be still, to name your baby, to not name them, to be very sad, to be OK … grief is not one thing. There is no final destination, closure, being over it, moving on. Grief is a part of you just like any other experience you have had. Your feelings will change in intensity at different times. Life will continue. But don’t put any expectations on how it should be. Just ride the waves and reach out for help anytime you need it.

I know the intense desire you have reading this for there to be a happy ending: a living baby. Well, one day that might happen. It might not. For now, I am my own rainbow. I find joy in each day. I practice gratitude. I do things that make me happy. I am living the life that I chose rather than one I just happened to have. I make good choices for me and my family. My lost loves have taught me how to have the life I’ve always wanted. I am so grateful to them for all they have taught me.

Kate