‘When a baby dies’ – my own grief process

Here at The Ribbon Box, we’re about sharing personal stories as well as expert perspectives. We’ve turned to Clinical Psychologist Dr Michelle Tolfrey, who writes about her own experience of baby loss and rebuilding a life around grief.

Over to Michelle.

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

As a clinical psychologist, I’d worked with many people who had experienced loss in a multitude of contexts. I understood grief, felt equipped to support trauma, and had helped people through some incredibly difficult and dark times. But the intricacies and complexities of losing a baby still shocked me. We grow up surrounded by advice on how not to get pregnant. If we are lucky enough to become pregnant, we are bombarded with messages about how we should look, feel, and what we should buy. And yet, so few people talk to us about baby loss, despite how often it happens.

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

As Baby Loss Awareness Week approaches 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, they all acknowledge that grief is not linear and that no two people will experience it in the same way. The most commonly shared models suggest there are stages or tasks involved in grieving, but these are often misunderstood as a checklist or timeline. In reality, they simply remind us that the emotions we experience are common, normal and part of grieving someone we love. They were never intended to provide a clear structure for how grief unfolds.

When we are at our most vulnerable, we naturally look for reassurance that the pain will end, or at least soften, with time. Our human brains crave certainty and order, but the reality is that grief is unpredictable, complicated and messy. And that’s okay. It is completely normal.

It’s also important to recognise that we all arrive at loss from different starting points. We are unique individuals with our own personalities, life experiences and ways of coping. Grieving the death of a baby may bring previous losses or traumas to the surface. It can also intensify existing mental health difficulties. For that reason, every grief story deserves compassion – both from those around us and from ourselves.

2. Grief is as physical as it is emotional

One of the things that surprised me most was how visceral grief was: the tightness in my chest, the emptiness that settled in my body, the tension in my jaw, and the way my digestive system seemed to slow down. The physical impact of grief is still less researched than its emotional effects, but we are becoming increasingly aware of how trauma lives in the body. 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 Lois Tonkin (2008), which suggests that the size and shape of grief remain the same over time, but that our lives gradually grow around it. I also wonder whether, after the loss of a baby, our lives first become smaller before they begin to expand again.

In the first few weeks after Orla died, I confined myself to a single room in the house. It felt as though I needed as little space around me as possible, trusting four walls to somehow hold my brokenness together. That room felt safe. There were no pregnant people, no newborn babies and no difficult conversations waiting for me there.

But as time passed, my world slowly grew. I stepped outside and walked to the local shop. I got on a train by myself. I started seeing people again. My life expanded inch by inch until I reached a point where I could finally breathe, and eventually laugh, and discover joy again.

The intensity of my grief is still there if I lean into it. It’s just that now I have many more safe spaces – both internally and externally – to return to.

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.

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.

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.