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Here at Fertility Help Hub we’re about sharing personal stories, as well as thoughts from experts. We’ve turned to Clinical Psychologist Dr Michelle Tolfrey who has written about her own experience of baby loss and re-building a life around the grief.

Over to Michelle…

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Until 2016, I had no idea that Baby Loss Awareness Week existed. Despite experiencing an ectopic pregnancy the year before, the world of baby loss just wasn’t something that had been brought to my attention. I had surgery to save my life and was advised by the surgeon that I could return to work the following week if I wanted to. The discourse was that this was ‘just something that happens’ and I was left feeling that I had to move forward and forget about it. But of course, I didn’t just forget.

Thirteen months later, after a wonderful healthy and low risk pregnancy, my first daughter was stillborn at 37 weeks. Orla was perfect in every way and no cause was found for her death. Again, the narrative was that it was something that can sadlyjust happen’.

But losing a baby at any stage is never ‘just’ anything.

As a Clinical Psychologist, I have worked with many people who have experienced loss in a multitude of contexts. I knew about grief, I felt equipped with understanding and treating trauma and I had supported people through some very difficult and dark times. But the intricacies and complexities of losing a baby shocked me. We grow up drowning in advice on how not to get pregnant. If we are lucky enough to get pregnant, we are bombarded with how we should look, feel and what we should buy. And yet no one thinks to educate us about baby loss, despite how often it occurs.

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My subsequent pregnancy with my second daughter, who was born just 11 months after Orla, was fraught. I spent most of it emotionally disconnected from my expanding belly. I was grieving whilst growing another baby. My mind and body were equally traumatised and trying to make sense of what was happening, and this didn’t stop once my baby was safely born and I took her home. Grief is part of my life story and now I believe that it enriches how I show up in the world both personally and in my work.

As Baby Loss Awareness Week approached again, I wanted to share some of the things I have learnt about grief and grieving when a baby dies:

1. There is No Right or Wrong Way to Experience Grief

Whilst there are models of grief and grieving that give us a sense of what we might expect, these all acknowledge that grief is not linear and not everyone will experience grief in the same way. The most commonly shared models suggest that there are stages or tasks involved in grieving, but these are often misrepresented by others as a menu or timeline for grief. Instead, what they really show us is that the emotions we do experience are common, normal and part of the process of grieving a loved one. They were never developed to provide a clear structure for how grief unfolds. But of course, when we are at our most vulnerable, we desperately look for reassurance that the pain will end, or at least soften, as time passes. Our human brain craves certainty and order, but the reality is that grief is unpredictable and messy. And that’s okay and completely normal.

It’s also so important to recognise that we all arrive at our losses from a different starting point; we are unique individuals with our own unique personalities, life experiences and ways of coping. Grieving the death of a baby may bring up memories of previous losses or traumas. It can often exacerbate other difficulties we have experienced with our mental health. And for this reason, our unique grief stories should be treated with compassion – both from others and ourselves.

Related Article – Miscarrying whilst On-Call as a Doctor

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2. Grief is as Physical as it is Emotional

One of the things that surprised me the most was how visceral grief was; how my chest constricted, how empty and hollow my body felt, how my jaw tightened and my digestive system slowed down. The physical responses of grief are less researched, but we are certainly becoming more aware of the impact of trauma on our bodies: the body keeps the score.

3. You Never Get Over the Loss of Your Baby, But You Can Find a Way to Grow Your Life Around the Loss

There is a beautiful description of grief by grief counsellor Tonkin (2008), which suggests that the size and shape of grief remains consistent over time, but that as time passes, our lives start to expand around our loss. I also wonder if there is an initial shrinking of our lives after the loss of a baby whilst we start the painful journey of processing our grief. I remember in the first few weeks after Orla died, confining myself to one room in the house. It was as though I needed there to be as little space around me as possible, putting all my trust in just four walls to somehow hold my brokenness together. This room was safe – there were no pregnant people, no newborn babies, no difficult conversations to be had. But as time passed, my world grew. I stepped outside of the door and walked to the local shop. I got on a train by myself. I started to see people. Life grew inch by inch until I started to feel as though I could finally breathe – and eventually laugh and discover joy again.

Yet the intensity of my grief is still there if I lean into it. It’s just that now I have a lot of other safe spaces (internally as well as externally) to retreat to.

Related Article – HELLP Syndrome and Baby Loss – Trust and Follow Your Instincts

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4. There are Secondary Losses to Navigate

Just like a rock being dropped unceremoniously into a pond, the ripples created by loss can be unpredictable and far reaching. Many people have to navigate the subsequent loss of friendships or jobs. Relationships can change, we may feel let down by those closest to us or unable to continue contact if their babies were due at a similar time to ours. Our world as we knew it has been irrevocably changed and this cannot fail to result in some collateral damage.

But in addition, we potentially need to navigate the loss of how we thought our journey to parenthood would be. Most of us would not have predicted our fertility paths to include loss; we may grieve the loss of innocence, the loss of having a completely carefree subsequent pregnancy experience or the loss of our families looking the way that we imagined: number of children, age gaps – all of these losses matter and need to be acknowledged and validated.

5. It (Still) Takes a Village

Humans evolved to be with others: we require physical and emotional connection and support, and yet modern lifestyles have led us to become increasingly isolated from families and wider communities. When someone has a baby, we often hear the phrase ‘it takes a village to raise a child’ which is so true – but what about when a baby dies? We most certainly need a village then too.

I have learnt that there are some people who ‘can’ and some people who ‘can’t’ when it comes to loss and grief. There may be a multitude of reasons for this and, as painful as this is, we might need to let go of that person, or at least the hope that they will be there for us in the way we need them to be.

But much like the idea of growing our world around our grief, we can grow our village(s) to find the acceptance, validation and support we need when we lose a baby. Support groups, online forums and social media can provide incredible lifelines and I have no doubt that it was finding my new village that helped me survive the first year of grief. Having people who really got it meant that I didn’t feel as let down by those in my life who could not understand. And this can sometimes help preserve relationships in the longer term.

Related Podcast – Dealing with Grief and Saying Goodbye with Zoë Clark-Coates

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6. It is Never Too Late to Find Grieving Rituals

Rituals can play a hugely important role in the grieving process and are part of you forming a healthy enduring relationship with the person who has died. They are an anchor to a point in your life story, a reminder of your everlasting connection to your baby. I think it is important to remind yourself that it is never too late to start these – I have worked with people who have created new rituals many years down the line. These could be one-off events, such as having a tattoo, planting a tree, writing a letter or a fundraising event. They could be annual events to mark a significant date such as lighting a candle, visiting a certain place, or offering a random act of kindness. Or you might want to find connection in nature; being by the sea or in woodland.

The important thing is not to put too much pressure on yourself. There are no rules and you need to do what is right for you, which can change over time.

7. Understanding When Grief Becomes Something More

It can be very easy for our pain to be dismissed by ourselves or others as ‘just grief’ (although grief is absolutely anything but ‘just’). But it is really important to understand that sometimes grief can also sit alongside something else. Losing a baby is a hugely traumatic event of itself, but it can also come with all sorts of physical and emotional trauma. Recent research confirmed that women can experience high levels of post-traumatic stress, anxiety and depression after early pregnancy loss (Farrem et al, 2020). However, I often hear of people finding it hard to access the right support for this, including evidence-based therapies for PTSD.

Whilst grief is a completely normal and human reaction to loss, if the impact of this interferes with your day to day functioning or your overall wellbeing for an extended period, it is imperative that you speak to someone for further support or guidance. In the UK, your GP should be able to refer you to a local NHS service, but there are other baby loss charities who can also offer signposting and support on where to get further help.

Charity Saying Goodbye offers support and reaches over 50,000 people a week. They can help you through any form of baby loss.

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8. Beware of the Comparison Trap

We are all vulnerable to comparing ourselves to others, particularly in this digital age. With more people sharing their grief online (which is obviously a wonderful thing), it can be even easier to feel like we should be grieving in a certain way. Some people are ‘doers’ and throw themselves into fundraising or campaigning. Others might show their grief journey through writing, photography and memory making. None of these is better than the other. None of them indicates greater worth as a parent or greater love for their baby. And remember that what we see online is very rarely the full picture.

You do YOU. And whatever your grief journey, you are loved, you are worthy and your baby matters.

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