I’ve never liked New Year’s Eve. Like pretty much everyone, I enjoy fun and a good time, but I hate organised fun and I can’t stand it when there’s pressure to be happy and have a #amazingtime, it brings out my grinch. Added to the ridiculous prices and horrible overcrowding…let’s just say NYE has never been my scene. I don’t do new year’s resolutions, I find they tend to set me up to fail. But I do love a good reflection session, and that’s what you’re going to get in this post.
Since we lost Kaitlyn, I’ve found new year to be very difficult, especially that first year. Just six weeks after Kaitlyn had died, we moved into a new year and I simply was not ready to leave 2018 behind, the year that I became pregnant, grew my baby and lost her again. But time stands still for no woman. I have learnt that Kaitlyn stays in our hearts and our family no matter what year we are in. I’ve learnt that she stays in the hearts of those close to us, our family and amazing friends, and people that read this blog, and for that I am so grateful. But at the same time I feel so sad seeing in yet another year that Kaitlyn should have been here for but isn’t.
So many people have called 2020 a write off, and I understand why. It’s been one hell of a year. People I love have lost people they love, others have fought hard against a virus that has left them with long term problems. Life as we know it has changed. Sometimes I think the 18 months that came before prepared me better for this – losing my social life, my stability, my very self, these things all happened to me long before 2020. This year has not been my worst year by quite a long way. And new normals? Yes very practised at new normals, thanks…But then sometimes my resilience deserts me and I think “how many “new normals” can I really handle in such a short space of time?!” And it’s not just Covid either. The initial findings of the report into maternity failings at Shrewsbury and Telford are horrifying and will stay with me for a long time. Miscarriage has been talked about more openly by more people in high profile roles than I remember happening before. My heart goes out to anyone that lost a baby during Covid; it’s a horrendous experience on its own, without the awful restrictions that a pandemic brings.
For our family it’s been one hell of a year too. The biggest reason it has been far from a write off for us was the arrival of our beautiful K, who brings light, joy, chaos, love, sleeplessness and wonder into our lives every day. I’ve been two different people during this year – in the first half my mental health was in a dark pit and I could hardly breathe, all the time, day or night. Frankly it was absolutely bloody awful and I wouldn’t wish that level of anxiety and trauma trigger on anyone. Was it worth it? Of course yes, a resounding yes, a thousand times yes and I’d do it all again to get my boy. But I’m not sorry to see the back of the mental health impact of pregnancy after loss during a massive pandemic. Yes I’m exhausted right now, hardly sleeping and constantly worrying if I’m doing the best I can for my children when they can’t see their friends, do their clubs, even meet other people in K’s case. But I can breathe and laugh and drink and eat treats and relax and drink herbal tea and have a bath and play and…actually imagine a future, even with Covid. All the things that might sound so banal and fundamental but that I was too terrified do for 8 months. Six months after K’s birth I still don’t take for granted what it really feels like to not carry a tonne of rocks on my back all the time.
It’s been one hell of a year for M too. As Kaitlyn’s parents, S and I have of course “walked a journey” together, so to speak. But M has absolutely walked that journey too. Our bond is incredibly special and she amazes me every day. She became a big sister to a living sibling and she is absolutely wonderful at it, she steps in and calms him when I’m in the middle of something, fetches and carries things, waits patiently when I can’t get to her straight away. And K adores her, both their faces light up when they see each other and their bond is wonderful to see. M often tells me that she wishes Kaitlyn were here to join in the fun. Her understanding of death is developing as she gets older and I always have a careful eye on how she chooses to handle her emotions – sometimes by speaking, sometimes by going off privately for some down time. She started school and I’m so proud of the way she’s handling the transition, especially after 6 months at home with us and a new baby arriving. I have been doing a photo journal and adding a photo every day since lockdown 1 started. When I look through them I can really see the plus side of the precious time we’ve had together. Of course I wish it hadn’t come at the cost that it has to so many people, in terms of physical health, mental health and financial security. I’m not going to sit here and wax lyrical about the benefits of lockdown when so many have struggled. I’m just grateful that M and I were able to make the most of that time together, and having S at home with us rather than off commuting every day.
For Kaitlyn’s legacy, this year has been a strange one. I have been caught in between wanting to set the world on fire in her name and not having the energy to lift my head off the metaphorical pillow. Baby Loss Awareness week was exceptionally difficult this week; I did some things I was proud of in Kaitlyn’s name, such as the Sands steps challenge, singing at the local remembrance service, recording Kaitlyn’s story for Naya’s Wish and recording information about the Flutterbyes Bereavement group and Kaity bear weighted memory bears. But mostly I felt furious and frustrated the whole week, as in amongst Covid it felt like the walls of our echo chamber closed in around us, especially with baby loss charities struggling for funds and to have a voice amongst the constant Covid news. I desperately want to do some work around maternity safety and have no idea where to start. But there are plans afoot for our local Bereavement support services that I have worked on with fellow dedicated parents and professionals, and that will yield some important work in 2021. Above all, we carry our Kaitlyn with us every day. Forever our middle child, our second of three, our perfect, much-loved girl 💜
So as we enter 2021, my first few days will be in limbo until we pass the anniversary of Kaitlyn’s cremation on 4th January. For the rest of the year I hope that the vaccine is rolled out quickly and works and we can all start to move forward, as much as possible. If you’ve read my blog for long you’ll know I don’t do blind optimism. You’ll also know I have a complicated relationship with the Universe. When the whole of social media was full of “wow it’s 2020!” posts last year I quietly panicked, wishing people would stop tempting fate…of course my logical brain knows that has nothing to do with where we are now. But just to be safe, I’m going to quietly wish you a safe, healthy and peaceful New Year, slip off to bed after the baby’s late evening feed and hide away from social media until the new year noise has quietened.
It was a photo finish, but a finish nonetheless. Today I completed the #stepsforsands challenge to walk 310,000 steps during October and raised £715 for Sands in the process, thanks to my wonderful friends and family.
It’s hard not to reflect when you come to the end of a month long challenge. I have really taken a lot from being part of it. On the one hand, October is a really dumb month to take on a walking challenge! I got rained on too frequently for my liking. I did four days of the challenge in self isolation while awaiting a (thankfully negative) Covid test, and five days of it feeling like crap with a stinking cold. On two occasions it rained so hard that my raincoat actually soaked through! But on the other hand it is Autumn, Kaitlyn’s season, always my favourite time of year. I have had a reason every day to get my wellies on, get outside, splash through puddles, swish through leaves. Sometimes I’ve had the little kids with me, often I’ve been on my own behaving like a big kid, just because I can! It has done my head the world of good. There have been walks where I have cried, listened to Kaitlyn’s music and visited her special place. Walks where I reflected on how grateful I am for all my children, my husband, my friends and family. Walks full of audiobooks and podcasts, walks with phone calls, walks shining with beautiful blazing rainbows. I’ve taken lots from it physically as well, regaining some strength after a traumatic pregnancy and a c-section. Some theories say it takes 30 days to build a new habit; my daily walks have become so important to me that I plan to continue them as much as possible.
I found Baby Loss Awareness month and week (BLAW) very difficult this year. I ran headlong into the start of the month, feeling stronger than last year and thinking I could be part of making a real difference. Then John Legend and Chrissy Teigen lost their baby boy, Jack, and the ensuing conversation on social media was difficult to witness. Both parents have responded with such strength and eloquence to the completely unnecessary criticism they received and raised awareness amongst millions of people who will previously have known nothing of child loss. But it was hard to watch and for me, whose news feed is full of baby loss accounts, it felt overwhelming, a bit like a bombardment. Social media can be a real force for good, but it can also break your brain.
What I found hardest about the rest of BLAW was feeling completely trapped in an echo chamber. For most of the week it felt like the mainstream media paid no attention whatsoever. There was no space amongst the daily reports of Covid cases and never ending government ineptitude. Important causes and affected groups in society are all, quite rightly, looking for space for their issue – free school meals, the arts industry, the north of England, maternity in its broadest sense and the restrictions imposed. Even since starting this post this morning, a second lockdown has been announced. People’s heads are full and, as everyone keeps saying, these are indeed strange (read “pretty crap”) times we live in. I don’t for one moment begrudge these items taking up the news, they are important and Covid and associated issues affect everyone. It’s just that October is the one precious month baby loss parents have to feel like the world joins us in our reality. We live it every day, every minute, we don’t need a month for awareness and remembrance. It’s important to us because for a short window in the year we can feel heard and seen as a whole community. When that didn’t happen this year, I started to really struggle. On Wave of Light day, 15th October, the world did pay more attention and I was relieved to see this. But again less than before. Fewer candles, fewer posts. At 7pm on 15th October I noted all sorts of WhatsApp conversations and social media content that felt banal and irritating compared to the enormity of marking our children’s passing. That sounds more harsh than it’s meant to, and maybe it’s unreasonable to expect the whole world to stand still. But when your child, that you created and grew, the most precious and important aspect of your existence has died, you crave the whole world standing still and taking notice, all at once, just for that one moment, just for as long as it takes to light a candle. The photos and posts I received, though small in number, were a relief and each candle lit a small piece of my heart with such love for the people that remembered my daughter.
My way of coping with my constant frustration during BLAW was to immerse myself in local awareness raising and remembrance. The phenomenal bereavement lead at our local hospital organised an amazing virtual event. Parents from our bereavement group, Flutterbyes, went to the hospital in groups of five and recorded videos about the things they have set up in their children’s memories. Amazing charities created videos, set up by fantastic and dedicated parents. I recorded videos about Flutterbyes itself, which I was part of establishing, and the weighted memory bears scheme that I set up through the hospital. The event included a charity raffle that raised £3,500 to split between five fantastic baby loss charities, two national charities (including Sands) and three local to our area. On Wave of Light day we held a small, beautiful service led by a wonderful vicar who had himself lost a child. I sang as part of a quartet for this service and that felt a fitting way to remember Kaitlyn, as singing was such a fundamental part of my life during both my daughters’ pregnancies and after Kaitlyn’s death. Instead of taking on the world, I focussed on doing what I could in my small corner, and it helped.
For next year I hope to focus on breaking out of the echo chamber. There was more on wave of light day, and the Duchess of Cambridge visited Tommy’s, which with her profile was fantastic for raising awareness. I personally want to do more in this arena now – I’m not sure how yet, I’m no kind of expert on these things, so I’m all ears if any comms type contacts do have any good ideas! Social media is great for many things but it has its setbacks. Your feed is of course made up of self-selected content, and who is most likely to follow baby loss content? Other baby loss parents. This means we have access to each other for support in a way that never would have happened before. But on the flip side it doesn’t mean we’re always raising awareness when we want to, apart from the small percentage with something closer to “influencer” status, if that doesn’t sound to glib a label in this context. Above all else, I’m not great at social media and doubt I could ever become an influencer. So I’m going to put in more thinking and planning for next year about how we can have more of a presence in a way that raises awareness more amongst people that haven’t lived loss themselves. Any suggestions on a postcard please (probably a better way of reaching me with my crap social media skills!)
So now we enter November and a new lockdown starting right before mine and Kaitlyn’s birthdays. When the first lockdown started, all my coping mechanisms were blown out of the water. This time I’m not pregnant and I’m grateful that my baby is here safely and I don’t have that double minefield of Pregnancy After Loss and Pregnancy During Covid to navigate. This time, at-home coping mechanisms will be much harder to implement with a four-month-old to care for. We will have to find yet another new way of managing grief and trauma, and remembering our wonderful girl as we approach her second birthday.
For months now I have been crafting the posts to describe the experience of pregnancy after losing Kaitlyn. I tried writing them when I was in the thick of pregnancy and found I couldn’t summon the words. Now, eight weeks after the birth of my son, none of the words I have found seem adequate to describe the terrifying experience of pregnancy after stillbirth. I want you to know why I’ve written openly and honestly about this period. It is not to wallow, complain or over dramatise. It is not to be negative or stay “stuck” in grief or trauma. It’s for two reasons; firstly, to process what I’ve been through and secondly, to share it in the hopes of increasing understanding about what these sorts of pregnancies are like. Perhaps then we can start to offer better support to people in these situations. In a later post I will also talk about some of the things that did help me, and if that information helps just one other pregnant woman then it is absolutely worth the struggle to find the words. Because there is so much to say, I abandoned trying to tell a chronological story and fit everything into one enormous post; instead I have tried to cover different aspects of my experience in separate posts. This first one focuses on how trauma re-presented during this pregnancy.
Two words summarise the second half of my pregnancy – trauma and fear. To understand this, I ask you to focus on the word ‘fear.’ Take a moment to really absorb that word, let it roll around your mind and think about what fear truly feels like. Talking about ‘anxiety’ doesn’t come close; it was pure, visceral fear, a full mind and body response, like the kind you would feel if you came face to face with a sabre-toothed tiger. Imagine surviving a high-speed car crash and then being asked to spend 8 solid months strapped into a car travelling at 100mph with a drunk driver in control. It was 8 months of living in survival mode, pure adrenaline coursing through my veins even in my sleep, my body reacting to things that my mind couldn’t compute. Waking up in a cold sweat multiple times a night because I had been catastrophising in my sleep. Thoughts running away with themselves until I had forgotten where I was or what I was doing. From 28 weeks pregnant this was my life all the time, literally all the time. There was no relief. No amount of breathing, anchoring, mindfulness, talking to people, nothing worked to calm the raging, ever-present fear. And yet even these words don’t come close. I don’t know if I will ever truly be able to describe how it felt.
The first trimester was characterised by anxiety, which stemmed from having had a miscarriage at 8 weeks. I had scans at 6, 8, 10 and 12 weeks with a consultant that I trusted completely and had agreed to take on my care for the whole pregnancy. At 7 weeks I experienced bleeding, exactly as I had with Little Bubba, which was terrifying. Time passed in a fog of Kaitlyn’s first birthday and fundraising concert, followed closely by M’s birthday and Christmas. All this time I was taking a ridiculous number of pregnancy tests, checking for blood on every toilet trip, constantly searching for the faintest signs that we were going to go through another loss. I was convinced someone would ask me if I was pregnant and the idea of that made me panic; I desperately wanted to keep it a secret and was terrified of jinxing things by sharing our news. I found out about the pregnancies of several friends and was completely taken aback at my reaction; I had assumed that being pregnant would change the way I reacted to pregnancy news, but I was so wrong. I put this down to several things: firstly, in my world a pregnancy does not equal a baby, so being pregnant myself did not reassure me that I would get to bring home a living baby. Secondly, I feel panicky for people, because to me pregnancy is not automatically safe, it’s not Hollywood-esque and I worry that a good friend could end up living the same awful devastation that we have. Thirdly, I will admit that I feel jealous of other people’s normality. I wouldn’t wish my experiences on anyone, but I can’t help wishing that I was still normal too. And finally, I realised that I couldn’t handle the idea of being pregnant “with” other people again. When I was pregnant with Kaitlyn I walked my pregnancy journey alongside some very close friends but I came home holding a memory box where a baby should be. There was something extremely triggering about the idea of being pregnant alongside others; it sparked a deeply rooted fear that I would have to come home alone and once again watch others live the life I wanted so much.
I came across this description of dissociation on Pinterest. These symptoms don’t all happen at once but even having one or two of them can be upsetting and exhausting.
There are key terms that have become part of my new trauma-related lexicon. A “trigger” is a reminder of the previous trauma that sparks a mental and physical reaction. At its mildest, which I came to call “Level 1”, this reaction was inside my head, I could cover up what it was doing to me but I probably came across as stand-offish and withdrawn as I tried to manage what was happening inside my head whilst holding a conversation. A “Level 2” response had me in tears, struggling to breathe and/or snapping in anger or frustration. And a full on, “Level 3” response was full dissociation, memories of Kaitlyn’s death overlaid on top of my present reality until it was impossible to tell whether I was sat in a room in 2020 or back in November 2018. Pregnancy announcements saw me swing between a Level 1 and Level 2 response. Level 3 was usually caused by a combination of things, for example having a blood test in a noisy environment.
Which brings me on to “overwhelm.” In the context of trauma, feeling overwhelmed means that my whole nervous system floods, my mind and body are unable to cope with the sheer amount it is trying to process, everything from sensory experiences (such as noise, which was a key trigger in my case) to imagined futures, memories of the past and the amount of adrenaline flowing around my body. In those times, everything becomes a trigger and sensory overload is a serious issue – the radio playing too loudly, too many people talking at once. These seemingly minor disturbances would have me in tears running from the Day Assessment Unit or snapping at my family to turn the damn TV down. Towards the end of my pregnancy I was seen by a newly established Maternity Psychology team and my excellent new therapist helped me to finally understand that what I was experiencing was genuinely as a result of PTSD. I wasn’t just an angry, snappy, person that could no longer be there for my friends or control my responses. It was a result of the trauma memories still sitting in the wrong part of brain. This was a real revelation to me and allowed me to let go of the guilt that was eating away at me. I had thought that I had PTSD under control because of the therapy work I had done previously and in my normal day to day life this was true. But being pregnant again had sent me right back to the start, like falling back down to the bottom of a well I had managed to climb halfway out of.
I think most people are familiar with the “fight, flight or freeze” responses. I found I was doing all three. My flight response was to completely withdraw from the world. As the weeks dragged on I stopped talking to people altogether. I hid away, covered by the Covid pandemic and height of lockdown. I stopped blogging, limited social media access and changed my privacy settings on WhatsApp. Most of all I refused to think about the future, living instead from one hour to the next. While this can be an effective way to manage anxiety, I find it restrictive and stressful as I am someone that needs to plan for the future. The future stopped stretching any further than seven days ahead. I didn’t buy any baby items, didn’t decorate a nursery. Didn’t think about what I might need postnatally, what recovery from a c-section might look like. In the final fortnight I bought one baby grow, one hat, one blanket and one teddy. My reasoning was that if my son died, I wanted him to have some special items that I had picked out for him just as Kaitlyn had. I couldn’t make this baby real to the world, in case the universe punished my audacity by taking him away.
My fight response was anger. It wasn’t always expressed but it flared up easily inside me, and when it was visible this was usually in the form of panicky tears or visibly shutting down. It was triggered most, I’m sad to say, by interactions with others, which is so often the way for people dealing with grief and trauma. When a midwife that didn’t know me suggested that I might not be able to come to hospital for checks during the early weeks of lockdown. Whenever anyone told me to relax or told me I had to enjoy my pregnancy. I struggled to describe my new world and therefore others couldn’t understand it; this was incredibly isolating and once again I felt trapped inside my own glass box, just like in the immediate weeks following Kaitlyn’s death. Some of this was about the way we view pregnancy in our culture. The conversation is slowly changing but for the most part we still struggle to acknowledge that babies die, especially later in pregnancy. Pregnant women are put under pressure to not feel anxious or low but to be glowing and happy all the time. I hope that one day we can acknowledge that being positive all the time isn’t natural for humans. Not being able to constantly look on the bright side doesn’t make someone a failure or a negative person; some battles are just too deep and too complex to be washed away in a blaze of rainbows. Having said all of this, I did enjoy being pregnant, in my own way; there was a golden nugget of hope wrapped inside the swirling fog of panic and trauma and grief. I had fought and struggled for this and I was grateful for every single day that passed safely. I bonded with my baby from the start, despite the constant fear of his death. But this tiny hope felt precarious and terrifying, and so the enjoyment I felt didn’t fit the normal paradigm, it wasn’t visible to others and I repeatedly tripped over my own tongue when I tried to explain how it felt.
My freeze response was a complete inability to make decisions. Some of these decisions were complex and came with significant consequences. I will ask myself for the rest of my life whether I did the right thing by delivering at 37+2, whether it was too early, was a c-section the right thing, should I have allowed him to arrive spontaneously? All my previous experiences crashed into each other in my mind – my NCT poster birth with M, spontaneous labour at 39+6, 9 hours at home, no drugs and a water birth. Kaitlyn’s death. How the hell could I know which path we would go down this time? There was no safe milestone in my pregnancy; however far I got, the riskiest and most terrifying time still lay ahead. Weighed against these worries was the huge looming risk that I allowed my pregnancy to continue and my baby died as a result. At 36+2 I went to hospital in such a panic that it was recommended I spend my final week in hospital. I froze in a haze of indecision, with my baby’s survival on one side of the scale and M’s mental health, already impacted by 3 months of lockdown, on the other. I was caught like a rabbit in headlights and in the end my midwife made the decision for me (gently and with my permission). In my life before I was a competent and decisive person. Now I felt the weight of every single decision sitting too heavily on my shoulders. This was made so much worse by Covid and having to go to everything alone, make decisions alone and M not being able to visit while I was an inpatient. S did his absolute best, but relaying everything to your partner on the phone or back at home is definitely not the same as having them there next to you.
The hospital was a minefield of triggers setting off the fight, flight and freeze responses. We had carefully considered attending a different hospital this time but everywhere else was so far away and I was worried about having to drive for an hour every time I needed a check up. Every physical space was a tangible reminder of all that had gone before. For antenatal clinic and the Day Assessment Unit I would be sitting in the very same waiting room that I sat in just before finding out Kaitlyn died; she may even have died while I had been sitting there. I began to feel not only that it was a terrible reminder of the past but also that it was a cursed space. One time I distractedly sat down in the very same chair I had sat in when I was having contractions with Kaitlyn; when I realised, I leapt out of it again as if it were on fire. For some reason in that part of the hospital the radio is always blaring, and it is full of advertising from photographers in the form of cute little newborns plastered all over the walls. These things are dreadful and unnecessary trauma triggers. Due to Covid the clinics temporarily moved to a different floor of the building…right into the area where we heard we had lost Little Bubba and then gone for surgery the next day. Out of hours care was the worst – up to the second floor, walk past the entrance to the bereavement suite, through the postnatal ward full of beaming parents and noisy newborns, through the delivery unit full of labouring women and into antenatal, where you might end up opposite a woman going through an induction of labour. It felt like running the gauntlet and I was emotionally drained by it. No part of the hospital was safe and the constant triggers were completely overwhelming.
These survival responses of fight, flight and freeze serve an important purpose; when faced with the sabre-toothed tiger, they initiate helpful behaviours designed to keep us alive. But we are only designed to live in survival mode for short bursts at a time, not day in day out for 8 months. By the day of the birth I was exhausted and depleted in every possible way and I had become so triggered by a simple blood test or injection that I had no idea how I was going to get through surgery. In the final weeks leading up to the birth, my fantastic new therapist worked with me to put strategies in place to prevent further trauma occurring during surgery. We focussed on management of symptoms, rather than treating the root cause of the trauma. We put breathing and grounding techniques in place that I spent weeks practising and, with the help of two amazing midwives that cared for me throughout, used during the c-section. We made a trauma birth plan, detailing the most common triggers, what people might see when I was triggered and how they could best help me. Every time I felt the panic rise during the c-section I managed to keep it under control using the techniques my therapist had helped me with.
We’re not designed to live in the fight, flight or freeze response for long periods of time. Living with the parasympathetic nervous system constantly activated is a horrible experience, not to mention the damage that stress hormones can do to the body over a prolonged period.
Looking back on the surgery I am so relieved that no further trauma occurred, partly because the outcome was a happy one, of course, and partly as a result of the preparation work we had done in therapy. This experience highlights once again the importance of skilled and effective mental health support in recovering from birth trauma; so many women go through subsequent pregnancies without any decent support in place. I was very lucky that the new psychology service opened when it did, but protecting people’s mental health shouldn’t come down to luck. When we think of PTSD we think about soldiers at war or survivors of major disasters; PTSD as a result of pregnancy loss or birth trauma is still poorly understood, though thankfully this is slowly changing. The effects of trauma reside within your body and physically inside your brain, therefore cannot simply be thought or medicated away. My therapist explained that in trauma, memories become stuck in the wrong part of the brain. There is a malfunction in the way the brain processes emotional memory, which literally changes the neuro-circuitry of the brain. This is what causes symptoms such as being triggered (or “hyper-arousal”) and avoidance of everything, from physical reminders to your own thoughts and emotions. Now that I’m no longer pregnant these symptoms have calmed down significantly but they are still there, so there will be ongoing therapy to start finally addressing the way the memories of Kaitlyn’s death and birth have been filed in my brain. It will be hard, upsetting work, but necessary if I want to really reclaim my life. After almost two years of heartbreaking grief and an extremely traumatic pregnancy, I am ready to regain some normality, joy and stability – in fact I crave it. I will never, ever leave Kaitlyn behind, grief will always be part of my life and Kaitlyn will always be present and never consigned to my past. I will always speak her name with pride and love. But I finally believe that I do deserve to feel happiness again, and all three of my children deserve that too. After all, I cannot best serve Kaitlyn’s memory and legacy when I’m ruled by PTSD.
Despite everything I’ve written here, I look at my perfect boy sleeping peacefully on my chest and know that every second was worth it. Every panic attack, every tearful night, every rushed drive to hospital. Deciding to try again for a baby after losing both Kaitlyn and Little Bubba felt like stepping off a cliff and praying I would fly, and with our darling boy here I can now say that I am glad we were able to step over that cliff edge. This feeling of gladness doesn’t negate the trauma, doesn’t make it ok that pregnancy had to be that way this time. Trauma and grief and gratitude all exist alongside each other, and once this next lot of therapy is complete I really hope to add true joy to that list too. Thankfully for us it was worth the battle to get here and I would do it all again to bring home the baby we so desperately wanted and now have the privilege of cherishing.
In the moment my first child was born I felt relief. My life was simple and uncomplicated in those days, and my relief was mainly that the labour was over. At 39 weeks and 6 days with a “natural” (urgh) birth that could have graced an NCT poster, it had never occurred to me that my daughter would be anything other than ok. Looking back now I am forever thankful that I got to experience her pregnancy, birth and babyhood with the heady mix of overwhelm, happiness, tiredness and first time mum worries, but entirely free from crippling anxiety, grief and trauma.
In the moment Kaitlyn was born I felt the most overwhelming love at exactly the same moment as my heart shattered forever. The silence was deafening. In that moment the person that I was, that I had been all my life, died as well.
In the moment my son, my third child, was born, all my worlds came crashing together. It was the most medicalised, surgical birth experience you could imagine. I had been warned that he might not cry straight away and that was normal. But he did. I heard his startled little cry and the floodgates opened, every emotion I had been too scared to feel in pregnancy flowing out of the little box they had been shoved into in the back of my brain. The most intense relief at his safe delivery; I could hear it for myself, he really was alive! An intense joy. And a tidal wave of grief, the desperate grief and sadness and longing for Kaitlyn that I had spent 8 months blocking out, instead feeling numbness seep over me when I thought about my darling girl. Lying on the theatre table I sobbed so hard that I briefly wondered whether it was possible that my insides could come out where they hadn’t even started stitching me back together yet.
I held my beautiful boy in my arms and the duality continued; so much love and yet the ghost of past experiences laid over the top. Remembering holding a baby that didn’t cry, didn’t wriggle. The same exclamations over the full head of dark hair. A complex feeling of simultaneously being in the present and being in the past.
Over four weeks later and that duality is still very present, and will be for a while I’ve realised. I am overjoyed to have my baby boy and I am grateful, I snuggle him close and stare at him in wonder every day. And I miss Kaitlyn. Those simple words don’t even come close to describing a grief that sits on my chest like a bag of rocks, that washes over me and catches me out with no warning. Musical toys gifted to my son have me sobbing over the memory of winter 2018, coming home without my baby and boxing up her beautiful things. Every little thing he does, I wonder if Kaitlyn would have done the same. I search his face hoping to see a resemblance to Kaitlyn, then cry because that resemblance is definitely there. I often feel as if I am right back at the start of my grief, before I had ever learnt to even partly carry it. I feel like I will need to relearn to carry it all over again. My heart aches and still I sob, for Kaitlyn, for my eldest daughter, whose life has been so deeply affected from such a young age. For the person that I used to be, for the loss of uncomplicated joy in my life. And for my son, who will never know the person I used to be, and with whom my bond is as strong as any of my children and yet so entangled with grief.
I’ve never liked or really used the term “rainbow baby”. Kaitlyn is not a storm, and her death isn’t a storm – storms end, but her loss never will. Alongside the darkness of Kaitlyn’s death sits the everlasting flame of my love for her and the beautiful memories of my pregnancy, when she was alive in me. My son brings light and joy into my life but the gaping hole in my heart still remains. All three of my children occupy unique and separate spaces; they are individuals that each bring their own wonderful gifts. My baby boy hasn’t healed my heart, but please don’t take that to be more negative than it is. I adore every fibre of him and whilst I haven’t yet relearnt how to feel joy, really feel it as an emotion, I can at least now envisage a day when that could happen. Even that seemingly small statement is a huge shift for me. But I am still Kaitlyn’s mother, with a mother’s love for her dead child and so my heart will never be healed from what we have lost. Just as Kaitlyn did not replace her older sister, so her younger brother does not replace Kaitlyn. Any parent understands that one child does not replace another, but somehow when it comes to baby loss this is how we talk, as if a new baby makes up for a baby that has gone before. It isn’t so. This is why the rainbow doesn’t work for me – I don’t think of my son as emerging out of Kaitlyn’s death. That isn’t the backdrop that I want for his life. I have nothing at all against others using the term for their own families, I just prefer not to label my own children as sunshine, angels and rainbows. (However I will still dress my baby in rainbow stuff because there is an awful lot of it about at the moment and some of it is gorgeous!)
My challenge now (or perhaps one of several challenges in this postnatal, new third-time-mum phase) is to find the space and time, amongst the hecticness of life with a new baby and a 4 year old during an ongoing global pandemic, to experience my grief again. Soon after Kaitlyn died I realised that if I boxed my grief away it would destroy me from within, but then in order to survive this pregnancy I had to box it away. Now I must let it back out, bit by bit, allow myself to feel it again without fear of punishment and without it overwhelming me to the point where I can’t function for my family. I must continue to parent Kaitlyn in amongst her older sister and younger brother. Grief is born of love, and my love for Kaitlyn will burn brightly forever. She is worth all my tears and my attempt at words. And one day, when he is older, her little brother will know all about the special sister that changed our lives forever and taught us all a whole new kind of love, a love that no words can truly describe.
It’s been a difficult weekend for our family. Friday 15th May was the anniversary of the day we had to say goodbye to our Little Bubba. He had been our hope in the face of so much pain. But sadly it wasn’t to be, and at just eight weeks pregnant we had to say goodbye. Even amongst the baby loss community the loss of a much-wanted rainbow baby is seldom talked about. It’s an isolating experience within an isolating experience.
Little Bubba’s goodbye was swiftly followed by 17th May, the day on which it was eighteen months since our beautiful Kaitlyn died and was born. It’s a strange milestone, eighteen months. It’s not a birthday, and therefore not widely remembered or recognised. But to my mind it is a significant milestone in a child’s development. We have four videos taken on the day that M turned 18 months old, and you can see that she had started to really show her cheeky personality. She’s walking and running steadily. In one video she points at herself and says her full name, in another she points at my hand and says “Mummy’s” then points at her hand and says “M’s” (obviously using her actual name). In yet another she is running after some poor ducks, flapping her arms and yelling “QUACK QUACK!!” She has the chubby face and gorgeous fine hair of a baby, with the visible personality of the child she is today.
Kaitlyn isn’t just lost to us in the past. She is lost in the present. We have lost a newborn baby and a child, a toddler. Would she have had a similar personality to M’s? Would she have been even more outgoing, or more circumspect? Would her hair have grown like M’s did? And the clothes, the beautiful clothes all lovingly packed and stored in the loft, waiting for Kaitlyn’s turn to wear them. I had dreamed of her in those clothes.
If I were to speak in general terms, I would say that most people think of Kaitlyn’s loss as in our past now. It’s been far longer than a year, that “year of firsts” that we are taught marks the end of grief but is really only the beginning of loss. Nobody says these things out loud, but we feel it in the way the conversation has shifted and Kaitlyn is spoken about far, far less. Sometimes it feels like people are thinking that surely we’re “better” now, we’ve “processed”, maybe even “moved on”? Surely we’re not still in pain, are we? I suspect some think we shouldn’t talk any more – it’s time to stop posting, stop the pictures. Perhaps they struggle to know what more to say to us. And perhaps that is understandable.
The trouble is, for us it doesn’t work like that. I haven’t lost Kaitlyn once, as an event in my past. I lose her every day. My family has a gaping hole in it that is never going to close. As time goes on, and fewer and fewer people can understand this, it gets harder to bear, not easier. I live a life as two people now, two people that constantly exist side by side, and to be honest it’s exhausting. One ‘me’ functions outwardly, laughs, lies and says I’m fine apart from to a tiny handful of people. Inside is the shadow person, fragments of a person, sometimes wanting to scream and sometimes just surrendering in silence to living in a world that largely has no idea what I’m talking about. It’s not the first time I’ve said it – we simply have to get better at dealing with death, grief and pain in our society, especially if that grief and pain is perceived to be “prolonged.” Eighteen months of grieving, talking, sharing – that is perceived to be too long. But eighteen months is the blink of an eye, it is no time at all. And there is absolutely nothing wrong with people that are still grappling with their heartbreak just eighteen months after their baby has died.
Our usual methods of grieving are severely restricted during lockdown. Granted we could now go to the seaside again, but firstly I don’t believe this to be a sensible idea just yet, and secondly I didn’t fancy being preoccupied by trying to keep my distance from the other billion people that might be desperate to get to the seaside now that there is some leeway in the rules. Last year, just two days after I had surgery, we threw a little mini memorial with family and friends at Kaitlyn’s bridge; no chance of anything like that this year. So we marked the day in quieter, home bound ways. I visited the crematorium; Kaitlyn doesn’t have a memorial there, but it’s a place I often go to feel close to her, as it was the last place that I was physically with her. We spent the last few weeks rearing some butterflies and were absolutely delighted when all five of them thrived and emerged gloriously from their cocoons. We had hoped to release them on 17th but they were ready before that, so on 14th we held a little butterfly release in Kaitlyn’s garden. I ordered a new bear for Kaitlyn, something I have been mulling over for six months now. I adore my Kaity bear, but she is fragile and not very transportable; sometimes I just want something I can hold close without worrying. The new bear is beautifully soft and a wonderful size. A few months ago I ordered a charm with Kaitlyn’s photo on for my Pandora bracelet, to match a similar charm I was given at Christmas when M turned one year old. Deliveries slowed for a while when Covid-19 hit but have recently picked up again, and my wonderful new charm arrived just a couple of days ago.
We didn’t manage to do much else, but we talked about Kaitlyn lots and held her just a little bit closer in our hearts. A lot of the time we are focussed on managing our “new normal” within our “new normal”, since the phrase has now shifted from the bereavement world and seemingly into mainstream terminology. And I’ve shared her with you today, through my words, which is something I have really been struggling to do lately. But I owe it to Kaitlyn, I vowed I would keep her memory alive and I owe it to her to find the words, however inadequate they feel these days. I read on the social media account of another bereaved mum the quote that we die twice – once when our body dies and again when the last person says our name for the last time. Kaitlyn has died once, before her time could even begin. I will fight with every breath I have to make sure she does not die twice, not while I am here to prevent it.
One thing I sometimes struggle with hearing as I carry on wading knee deep through grief is that I should always remember that people have good intentions.
It’s a difficult one to talk about honestly without sounding grumpy or like I’m having a massive go at people. Usually the point is made in response to something I’ve said – that a particular comment deeply hurt, or that certain lines of questioning trigger a trauma response. Sometimes I have expressed this in frustration, but more often I try to be matter of fact. The response about intentions is often made in a defensive tone, because it’s difficult to hear when you’ve had a negative impact on someone, especially when that was the very last thing you wanted to do. Nobody likes to hear that, I certainly don’t. But it’s so important that we become able to listen.
I know that the vast majority of people do not go around with bad intentions or mean to do harm. There is an astronomical difference between someone that intends to troll another person, bully them, abuse them, and someone that makes an honest mistake in something they’ve said or done. Almost every grieving parent I know, knows this as well. But we are often in a position of needing support from each other to manage the pain that can be caused despite good intentions being at play. The world of grief is complex and the world of baby loss is taboo; we are not set up socially or culturally to know what on Earth to do when someone we know goes through something like this. Everybody puts a foot wrong every now and then, including me, even when I am speaking to other bereaved parents. Being in the bereaved club yourself does not necessarily mean you always know the exact right thing to say to another bereaved parent (although perhaps we are better placed to know what to definitely not say). We are all different, unique, individual in our personalities and beliefs and pasts. Our babies’ stories are all completely unique, no two stories are ever exactly the same even if they share lots of elements. However, I find that the pain of having someone say something accidentally hurtful is erased pretty quickly if the person simply says “oh shit, I’m sorry, I totally didn’t realise my words could be interpreted that way” or some such response.
What compounds the pain and stamps it indelibly on my heart is to be told that my reaction is unfair because the person had good intentions. Weirdly enough it usually makes the “well-intentioned” person sound like their only intention is to come out beyond reproach, which unfortunately doesn’t constitute a good intention. A lack of actively bad intention also does not equal an actively good intention. Recently I posted a mini sound-off about the sheer number of times I get asked about my family planning in a week (“Just the one child? You’ll want to hurry up and give her a sibling soon…” that sort of thing). One response basically said that people didn’t mean any harm by it and it was up to the individual how they respond – the implication being that my view was unfair.
Three problems with this. Firstly in trauma it often isn’t up to the individual how they respond, unless they are already out of the other side of some very effective therapy, and even then a controlled response is not a guarantee. I am 15 months into living with trauma and sometimes I still have my breath taken away by how little people actually understand about what happens to you as a human being when you go through an event that is both traumatic and results in the death of a beloved, cherished child. I am far enough in now that I can’t really remember what it felt like to be a person that didn’t understand the impact of trauma, even though I spent 34 years in that blissful unawareness myself. So in the world that I inhabit, that part of the above response was factually and emotionally incorrect.
Secondly, in the above example of being questioned about the number of children I have, I find it difficult to see find the actively good intention. I can definitely see the absence of a bad intention; I assume the person is usually trying to make small talk, perhaps build a connection with the other person. OK, on reflection perhaps that is a fairly good intention, which I admit I sometimes overlook because of my desperate discomfort with small talk. When the conversation goes “how many children do you have?” followed by asking her age, what is she like, what things is she into, that feels like well-intentioned, interested small talk. When the more judgy “you’d better give her a sibling” or “you want to hurry up and get started, you’re not getting any younger” starts to creep in…how is that well-intentioned? I think I’m asking that as a genuinely open question, because in these instances I simply can’t see how anyone with any self-awareness can think they’re being anything other than intrusive and judgemental. To my mind the “good intentions” argument does not stand up to scrutiny here.
The third problem is that being kind, really genuinely behaving kindly on a regular basis, relies on an awful lot more than intention alone. I love an equation, and my kindness equation would look something like this:
We’re all human, and as such we all have it in us to behave accidentally unkindly or hurtfully from time to time. Kindness can be more nuanced than simply being labelled a “kind” or “unkind” person. If you have lovely intentions but what you actually do is something harmful, even by accident, then the willingness to reflect and learn needs to kick in so that you can bank the event in your brain and do something different next time. When someone points out that something you’ve said is hurtful, and your response is that the intention was good and therefore you should be immune from hearing such feedback, then unfortunately the good intention alone doesn’t get anyone very far.
With the recent sad death of Caroline Flack, there is a lot of talk of kindness on social media right now. I will confess that I didn’t actually know who Caroline Flack was before this week (yes, I do live in a cave). I have gleaned enough from the news and social media to see that what happened to her is horribly sad and I genuinely hope that talking more about kindness makes a difference. What niggles at me is that some of the people advocating kindness on their Facebook walls are the very same people that sometimes struggle to treat grieving and traumatised people with compassion and understanding (some, I hasten to emphasise, and not all, not by any stretch). What I’m talking about in this post is very, very different to active trolling and bullying; I hope it’s obvious to us all that that sort of behaviour is disgusting, although it happens frequently to broken-hearted parents simply trying to make their child’s impression upon the world. Seeking comfort from the social media accounts of people in a similar situation to me, I’ve seen comments from trolls that made my blood boil and my stomach turn. What I’m talking about here though is much more subtle, much more complex because nobody is at obvious fault in the same way. But – and if you only take one point from this post I hope it’s this one – it still hurts. Sometimes it really, really hurts. When a grieving person points this out, they are not trying to make you feel like crap. They are trying to protect their shattered heart and their overwhelmed soul, and make it just a little bit less daunting to get out of bed and go out into the world the next day.
If we genuinely want a kinder world, then we need to recognise that intentions alone are not always enough. Good intentions need to be backed up by good actions, which are informed by an openness to feedback and a willingness to understand why even well-intentioned actions can sometimes cause harm. I semi-joked in frustration to a friend this week that I wanted to get the saying “The road to hell is paved with good intentions” printed on a t-shirt. I would wear it under my clothes at all times and whip up my jumper (no doubt causing some alarm and horror in the process) every time I am confronted with the “good intentions” argument. It places sole responsibility on the grieving, traumatised person. It is up to the already struggling person to not feel pain when something painful is said or done, to completely control their thoughts, emotions and reactions. Whereas the other person removes all responsibility from themselves – their intentions were good, so their job is done – and places it squarely on the shoulders of the struggling person. Again none of this is done on purpose, but it can leave the grieving person reeling. There is a saying that we judge ourselves by our intentions and we judge others by their behaviour. That is human nature. Yes, us grieving folk do work hard, we work extremely hard not to be hurt, not to react to things that we know are not meant unkindly. In a world where we are poorly equipped to handle people’s pain and suffering, where there is immense pressure to always see the rainbows even when you’re elbow deep in quick sand, I’m afraid some re-education in how to talk to grieving and/or traumatised people is necessary. And for our world to be a genuinely kind one, surely we all need to be responsible for both cutting each other some slack and paying due care and attention to the things we say and do ourselves and the impact they can have.
I know that people worry that they need to be perfect, to have the perfect thing to say to someone that has been through something horrific. That pressure is horrible and difficult…and unnecessary. Nobody expects perfection. No grieving person expects to go through the world and encounter zero difficult or triggering conversations. Some of the best and kindest people in my life have had absolute foot-in-mouth moments and I have watched as the look of horror crosses their face as soon as the sentence is out in the air. In fact, sometimes they have said something, reacted in horror, and the thing they think will hurt me has sailed completely over my head. C’est la vie. The point is that their kindness comes in the form of their “oh god what have I just said?” moment. I have said things to other grieving parents, thinking that it’s the kind of response that would comfort me and finding is hasn’t comforted that person at all, proving that perfection is not possible. Perfection is not expected. All I am asking is that people are open to feedback, with the quid pro quo that the feedback is delivered gently and sensitively too. I am asking for a willingness to reflect, learn and adapt – and an ending to the expectation that it is up to the grieving to silently swallow our pain. It is a big ask, and it demands a lot from us all mentally and emotionally. But, to me, this represents kindness in its truest, deepest and most effective sense.
I really struggle with the word gratitude. Whenever it is said to me, or I read it somewhere, I can’t help but hear an unsaid end of the sentence. Practise gratitude…because you shouldn’t focus on the death of your child. Because it’s not that bad, you still have loads of good in your life. Because it could be worse?
I have always been an unwavering realist. I don’t overly focus on the negative, and I don’t overly focus on the positive. I’m usually able to see both in fairly equal measure, and I get equally irritated at blind optimism and complete pessimism. I’ve never had a day in M’s life when I haven’t been grateful that she is here. That doesn’t mean I can’t talk about the realities and challenges of parenting. And vice versa.
So I guess my personality partly sets me up for my response to gratitude in the context of my baby dying. Perhaps another part of the problem is that the concept of gratitude is launched on people far too early on in their grief. If today had been the first time someone had gently mentioned gratitude, maybe I wouldn’t have built up such a reaction to it. But mention gratitude to someone mere weeks or just a few months into their loss and you risk a backlash. The first time someone told me to be grateful that I had M was less than a week after Kaitlyn died. What to them probably sounded helpful and kind, hit me like a freight train and made me want to scream. How would you feel if your mother died and I responded by telling you to be grateful that you still had your father? We just wouldn’t say that sort of thing outside the world of baby loss. People need time to simply live for a little while in the devastation of what has happened to them before they are encouraged to start smelling the roses.
For too many people in the UK now, financial situations have become more and more difficult, the political situation feels somewhere between horrendous and downright dangerous and levels of anxiety and depression are through the roof. In this context we have latched onto positive psychology as some sort of bizarre panacea. Somehow life will be less hard if you meditate for ten minutes a day, eat your greens and keep a gratitude journal. That’s not to say that these aren’t all helpful things (although the gratitude journal thing isn’t for me). They really are helpful practices and I use some of them myself, in the context that is right for me. The issue I have is that they are presented as a fix, or worse a distraction – you can’t change the (sometimes completely unacceptable) situation, so instead you need to fix yourself. Politicians must love it – get everyone focussed on their gratitude, so they don’t focus on the increase in food banks, the state of education and health systems. The fact that in 2019 their baby can still die through inappropriate management of early labour.
Anything aimed at making me feel grateful to be alive feels horrendous and actually does me harm at the moment. My thoughts swirl in an uncontrollable vortex at the idea – in the earliest days I wasn’t grateful to be alive when Kaitlyn was dead, I wanted to be dead too, and then I would feel guilty that I was basically saying I wanted to be away from M, which I didn’t, and that all made me feel like I wasn’t being grateful enough for her either. It is often a deeply unhelpful place to end up and my mental health does much better when I’m not forced to think about whether I’m grateful to breathe in the air and feel the sunshine when Kaitlyn can’t. Another terrible one said to bereaved parents – the idea that you should be grateful because you can get pregnant and grow a child to full term. Believe me, none of that is any use if you can’t bring that child home. The point of pregnancy is not pregnancy, it’s to bring home your little baby and watch them grow up as part of your family.
There are things in this world I am indescribably thankful for. My husband. My daughter. My experience of being able to grow and parent my daughter for three years in my old normal, without the many shadows of loss hanging over us. My wonderful friends and family. Taking small steps in my recovery. Working for a kind and supportive boss and team. Being able to live in a lovely village. My thankfulness for these things is there every day but I feel it at times of my own choosing. It exists alongside my pain, on a parallel track – it is in no way a fix for my pain. I am thankful for Kaitlyn, too. I am glad she came into my life, to have been with her every day for 9 months. I am thankful to have been able to spend time with her, and that we no longer live in a time when dead babies are whisked away before the mother can see them. I am thankful for my unbreakable bond with her, a bond that endures even beyond death. This thankfulness sits alongside the pain of her loss, on its parallel track. Nothing will ever address, change or make bearable the pain of her loss. Sometimes I focus on the track of loss, pain and darkness. Sometimes I focus on the track of thankfulness. And that’s ok. It is possible to do both, to hold both, without that meaning that you’re not grateful enough, not positive enough, not “happy” enough.
A couple of weeks ago I was privileged to speak at the Wessex Stillbirth and Maternity Safety Learning Event, hosted by the NHS Wessex Clinical Network. The event brought together eight Trusts from across Hampshire and Dorset, as well as speakers from NHS England and Improvement (NHSE/I), the Healthcare Safety Investigation Branch (HSIB) and Sands.
I was there as a patient, rather than in a professional capacity, to share Kaitlyn’s story at the start of the day. I haven’t yet spoken at many events and this one was definitely the largest; I’m not sure how many people were in the room, perhaps around 75 or so. Enough that when I stood up at the front I definitely felt nervous!
It’s one thing being used to speaking to a room full of people for work, but it’s a very different experience when it’s something so personal, that involves sharing your deepest feelings and emotions. I told Kaitlyn’s birth story, and all the difficulties we had being heard and seen the day I was in labour. I could tell it made for difficult listening; after all, although we are still in the midst of various complaint and investigation processes, neither S nor I believe that anyone turns up to work in the NHS intending to do a bad job. It’s neither our personal nor our professional experience. I haven’t met anyone working for the NHS that wouldn’t be changed by being involved in a situation that ended the way ours did, so I knew this was going to be tough for everyone. But it had to be done. People talk all the time in the NHS about getting better at listening to patient experiences and using them to improve the way care is delivered. I feel I have an ongoing obligation both to Kaitlyn and to my own sense of professional integrity to stand up and be that patient now, sharing what happened in the hopes that improvements can be made, and to give Kaitlyn the voice she deserves. I am very grateful to the Clinical Network for being brave and committed enough to have our story in the room that day.
I spoke about the bereavement care we received in the immediate days after Kaitlyn was born. This was where we could all relax a bit, because the care we received in those early days was really good. I do look back and think I wish we had done more, or done things that didn’t occur to us at the time. But I’ve realised that what I’m really aching for is the lifetime of memories with Kaitlyn that I can never have. What’s important is that our bereavement care gave me memories to hold onto and that I actually look back fondly on, even though I was broken and devastated. I am certain that this has helped our family to grieve in a more healthy way than might otherwise have been the case. I shared these thoughts with the room, to highlight the critical importance of good bereavement care. It’s not a “nice to have”, it’s a core essential of maternity services.
I went on to talk about our lives now and how Kaitlyn remains a central part of our family, present in all that we do. We are a family of four, it’s just that one of us no longer has a physical presence. I finished by sharing (with permission) the babies of bereaved families we have met in the last ten months, people that have become our support network and trusted friends. Like Kaitlyn, almost all of the babies whose names and pictures I shared were born in the area covered by the Wessex Clinical Network. I think this really helped people to realise on an emotional level the human impact of baby loss, beyond the statistics.
I was really glad to have S with me for this event. Often I go off and do these things in my non-working time and as S works full time he can’t usually be there. But this time he was able to take some time off work and come with me. Being able to see his face in the audience was a source of strength for me; when I got too nervous, I could look at him and remember we were here for our daughter, to give her a voice.
After my session we went on to hear about the work of the Wessex Stillbirth Quality Assurance Review Panel and the National Maternity Transformation Programme. Putting aside anyone’s personal or political views regarding the former Secretary of State for Health, Jeremy Hunt, I am grateful that he set the ambition to reduce cases of stillbirth and neonatal death by 50% by 2030, with a 20% reduction by 2020. It has galvanised a huge number of people into action and resulted in resources and infrastructure being put in place to tackle this challenge. Perhaps not enough, after all it’s a drop in the ocean compared to what’s needed. But change isn’t made overnight and there has been a lot of change in a short space of time, with the introduction of the Perinatal Mortality Review Tool, the National Bereavement Care Pathway and the HSIB. I did sometimes hear people slip into talking about numbers and targets, as if the numbers were all that mattered. Sentences such as “we’re doing ok because we’re ahead of where we need to be by now” did slip out (meaning that if the end goal was a 50% reduction, and they had already seen a 35% reduction in cases, they were “ahead of where they needed to be by now”). Critics of health targets say that having a target drives this sort of attitude and language, at the expense of a more rounded approach to improving quality. But the unfortunate choice of language notwithstanding, every baby that didn’t die this year that might have died last year is another life saved, another family saved this pain. If a target drives that kind of change then I’m all for it. It isn’t the target that makes people say the sorts of things illustrated above, that is a mindset and a choice made by people, however subconsciously. It is possible to have a target for improvement whilst instilling the right mindset around improving care, and that is the bullseye we need to aim for if we want to make the best possible impact on stillbirth and neonatal death. I saw a good number of people in the room who were doing exactly that.
Each Trust presented the improvements it has made in improving both the safety of services and the quality of bereavement care. I became aware that Trusts are really trying to encourage families to take up post mortem examinations, unless there is a clear reason not to do so, such as having received a diagnosis during pregnancy, or cultural or religious reasons. The conversation was handled very sensitively, and Trusts are working hard to make sure a broader group of staff (such as midwives) have the knowledge and skills to discuss this potentially difficult issue with families. I shared our experience of the paediatric pathology service and how devastated we were to be told that we would have to wait six months for our report. The consultant pathologist for this part of the country gave a reassuring update that report turnaround times have already come down significantly since Kaitlyn was born and capacity is being further increased. This is great to hear; but we know that there are not enough experts in providing this service in the UK. I can understand why it’s not the most popular area of medical specialism, but something is going to have to be done about this capacity issue. Families put their whole lives on hold while they wait to learn what might have happened to their child, whether any other living children are at risk and whether they can ever have more children if they choose. Sometimes there are delays in even a baby even being seen in the first place, as in Kaitlyn’s case, in which case a funeral is delayed. It is further heartbreak not to be able to lay your child to rest and is a hugely off-putting factor when people are thinking about whether to have a post mortem carried out. Research is so vital if we want to make a difference to the number of babies that die shortly before or after birth. Post mortem examinations and the work the HSIB is doing, alongside the work of charities such as Tommy’s, all form part of this research.
The HSIB gave a fascinating talk outlining their work and the findings of the reports they have published so far. They have started around 60 investigations in total into intrapartum stillbirths (i.e. when the baby is still alive at the onset of labour but goes on to be stillborn) since they came into being, and 11 reports have been published. Kaitlyn’s own report is somewhere in that pipeline and I’m very much hoping it will be completed this year. There are themes surfacing from the 11 published reports. Undiagnosed intrauterine growth restriction is a common factor – some babies have a smaller birth weight than they should, and this is going undetected during pregnancy. I have my own entirely anecdotal, entirely unclinical views on this. In our current antenatal care pathway for low risk pregnancies, if your bump is measured small by the midwife then you are referred for a growth scan. If the scan is fine then you are sent on your merry way with no follow up. Instinctively this makes no sense to me. I find it difficult to see how the pace of growth can be tracked without at least two scans being performed. Growth scans currently don’t include doppler studies, which could help to identify circulation issues; this might be starting to occur if the placenta is degrading or there is a problem involving the umbilical cord. I am obviously not a doctor, I’m no clinician of any kind and what I’m sharing here are my thoughts as a mother that has been through two lots of antenatal care and losing one of my babies. There may be plenty of clinical evidence and reasons why the things I am talking about cannot be done or wouldn’t make any difference. Often, I hear the argument that if every tiny thing is looked and checked for, it risks hugely increasing anxiety levels and possibly causing unintended consequences for babies if an unnecessary intervention is made. Perhaps this is true, especially if something is detected that can’t be treated. It’s just that I am constantly struck with the feeling that we haven’t yet got the balance right; our antenatal care for low risk pregnancies leaves women alone to get on with things too much and we are not making the best possible use of the technology that we are privileged to have at our disposal in the 21st century.
Another common theme in the HSIB reports is the management of the latent phase of labour. This is a huge issue for me and a significant factor in both the way we were dealt with on the day that Kaitlyn died, and the way that her case has been viewed since. The latent phase of labour seems to be viewed by everybody as almost not real labour, as if nothing is going on during this time. In fact, the baby and the mother’s body are preparing themselves for labour; risks are present at any part of pregnancy and labour, and the latent phase is no exception. I’m not suggesting that every woman needs to rush to hospital during the latent phase, but if a woman contacts their hospital and needs help, they should not be dismissed and denied access to care simply because they are not yet having the “right” number of contractions in the “right” amount of time. Not all bodies adhere to the labour textbook, much like not all (if any!) newborn babies adhere to the parenting textbook. To hear an independent review body of expert investigators say that the management of latent phase was an issue was almost like a relief to me, a reassurance that I am not going mad to think the things I think. I get the impression that Trusts are finding it difficult to work with the HSIB because of conflicting processes and difficulties communicating – I guess teething issues happen with any new organisation coming into an established system. To them I would say, please keep going and don’t give up. What the HSIB is set up to do is hugely important and a step forward in the way incidents are investigated. I hope that their findings will inform improvements in care and the NHS can learn from its method of investigating. I guess we will need to wait and see. In the meantime I am aware of how much stock I am putting into their investigation of Kaitlyn’s death and this makes me nervous.
The day ended with excellent talks from Sands about parent engagement and the National Bereavement Care Pathway, a hugely important piece of work for ensuring that the quality of bereavement care is consistent across the country and adheres to CQC standards and best practice. Lots of different partner organisations were involved in its creation, including bereaved parents from across 32 hospitals. It was great to have Sands in the room for the whole day; they do such fantastic work and provide important support to families. They have a huge wealth of stories and experiences to draw on and this knowledge is so valuable in thinking about how to provide the best possible bereavement care. Our family has benefitted from the Sands helpline. Through a Sands group I have me a group of wonderful, inspirational women who give me strength on my hardest days. We used the Sands literature to understand all sorts of things we never thought we would have to think about in our lives. One day I hope to be able to train as a befriender through them, so that I can support others going through the enforced life change of losing a baby. And of course many of the people I have come across working for Sands have lost children themselves. If ever you are looking for a charity to support through your time or fundraising efforts, Sands is a hugely valuable organisation and a lifeline to parents like us.
It was a hard, tiring day but I was privileged to be a part of it. There is still so much to be done, but I did take some heart from seeing firsthand the work that is going into reducing stillbirth and caring for bereaved families in my part of the country. Speaking at events like this and making Kaitlyn a fabric of the improvements that need to happen is my way of parenting her. My passion is giving Kaitlyn the voice she’ll never have for herself – so much the better if it’s part of creating change.
I was pregnant with Kaitlyn for 39 weeks and 4 days. Today
it has been 39 weeks and 4 days since she died. Today is topsy turvy day, the
switch day. Kaitlyn has been dead for longer than I held her inside my body.
When it comes to trauma and sadness, bodies hold at least as
much as minds do. My body knows that this week is a big deal and it has been
letting me know in all sorts of ways – strange ligament-y twinges, achy hips,
mild nausea. Aching arms and a hole in my middle. All things that I had in
pregnancy or in the earliest months after Kaitlyn died.
Since returning from California I have been silent a lot more, in person and in writing. I thought it was because I had nothing new to say. I’m no better. Life is hard. I have no new language to try and describe those things. Then I realised that I have plenty to say, more than I could ever fit into the amount of time for which I would have someone’s attention to try and explain. But it has all been locked up inside, stuck beneath a cold metal layer of physical shock and trauma, of trying to cope and function. For almost three weeks I was almost completely out of action. Dragging myself out of bed over an hour late to force myself to go to work or to parent, then falling straight back into bed as soon as I could. So many tears I thought my face would wash away. The worst thing by far was the raging cortisol that flowed through my body day and night, never giving me a moment’s peace even in my sleep; I described it to one person as feeling like my blood had been replaced with pure stress hormone. I would wake up in the night, boiling hot, mind and heart racing and immediately burst into tears even before I was fully awake. Of course after a few nights of this, both S and I were exhausted, and exhaustion never makes anything any easier. I don’t think either of us are very sure how we got through those three weeks or how we kept any kind of normality going for M. I guess that’s what you do for kids, there’s an extra “kids” gear that keeps on turning even when you can’t.
Naturally the people who could see me asked if there were triggers, a very sensible question. There were – post-holiday blues, HSIB updates, a huge complaint letter to submit. Returning to work. The usual daily brutality of the nursery run. The usual freezing and crumbling of my insides at a baby’s cry, the burning rage of seeing any baby born after Kaitlyn, the sadness at siblings. Any day is full of a thousand triggers. But this was worse than any of that; I knew the answer, but I independently decided that no-one would understand. I went to my GP, who responded exactly as I thought everyone else would. “I really think you could benefit from an antidepressant” he said, several times. “But that isn’t my problem” I replied. “It’s my hormones.”
Ever since Kaitlyn was born my cycles have not returned to normal. The first half of the cycle, pre-ovulation, is now characterised for me by this elevated cortisol and complete inability to function. Literally the day after I’ve ovulated, I turn into a different human being. I wake up different, without the lead weights on my chest. I feel like I spring out of bed, able to face the day, able to think about living, no longer consumed with thoughts of not wanting to be here any more. Now of course it’s not actually like that, my life will never be like that again – but comparatively, that’s how it feels. From what I understand from reading, speaking to my therapist and others with first-hand experience, depression does not operate in this way. That being the case, it’s not depression that is at the root cause of my problems, therefore an antidepressant is not the answer. But hormones – hormones do work in this cyclic fashion. Anyone who has struggled to conceive or stay pregnant will no doubt have become an expert in the inner workings of a woman’s body, and I am no exception. I have learnt about different types of oestrogen and the effects of low progesterone and how cortisol and reproductive hormones affect each other. I finally understand my cycles and body in a way I never have before and am baffled at just how little we teach girls about this when they’re younger, both at school and within families. At school we teach them all sorts of drivel that they’ll never use again, but we don’t teach them about one of the most critical factors in their physical and mental wellbeing for the rest of their lives. But that is a blog post in itself. Everything I have read and learnt leads to one conclusion – a potential hormone imbalance, which could be temporary after all the shock and trauma my body has been through or could signal a bigger issue. It’s also possible that it could be treated, and that is definitely worth getting to the bottom of.
After twenty minutes of cajoling I finally stood firm. I said that I would not even entertain the idea of antidepressants until my hormone levels have been checked, so if the health service really wanted me on those pills it was going to have to do that blood test first. I said that it was irresponsible to ask me to lose two more babies before I could have a simple blood test; these are my children we are talking about, even if the world does not see them that way. No woman I know would take that kind of risk with their babies’ lives, if they already suspected before conception that there was a possible problem that could negatively affect the pregnancy. I get that the NHS takes a different view if you have had a miscarriage, but your body has returned to its normal state again – that is not where I find myself. I have a very kind GP and I could see that his advice came from a place of caring and wanting to ease my distress. He looked at me in exasperation and ordered the blood test for a couple of weeks’ time.
All of this continuous battling is a trauma trigger in itself. I go in ready to argue, and that spikes my cortisol levels. Then the fight itself takes me right back to the day I was arguing with the hospital while I was in labour, which is one of my worst flashbacks. A simple GP appointment leaves me exhausted. In eleven years in the NHS I have heard so much talk about how we should put the patient at the heart of care and treat patients as experts by experience…NHS speak for we need to listen to people and not dismiss them. But somehow when it comes to women’s health, pregnancy, women being trusted to understand their own cycles and symptoms and bodies, we dive straight back into the 18th century. I’m half surprised no-one has brought out their fainting couch and asked me to waft the smelling salts – but gone are the days when I allow anyone to dismiss my views or diminish my voice, no matter how kind they are trying to be. Perhaps these tests will come back completely normal and there is no hormone issue. That would be great, really great. It doesn’t mean my experiences and descriptions are wrong and it doesn’t mean the GP is right about medication. Now to be very clear, I have absolutely nothing whatsoever against antidepressants. They serve an incredibly important purpose and improve quality of life for so many people; asking for and accepting that kind of help takes a strength that most people can’t realise and that I respect beyond measure. It’s simply that I don’t believe that they are the right solution for the problems I’m experiencing. That is not based on any kind of pride, but of a deep desire to treat what is at the root cause, and not just the symptoms. It’s a decision based on observation, constant personal insight and logic. S agrees with me, which helps enormously as I respect his opinion and logic enormously.
On top of all of this, I have had three sessions of trauma therapy through our local Improving Access to Psychological Therapies (IAPT) service. Whoever in the NHS came up with this service idea was definitely on to something. Therapy doesn’t solve everything, but it is slowly helping me to address the things that most impede my day to day life – namely the triggers and symptoms of PTSD. This week, for the first time since Kaitlyn was born, I have been able to have and enjoy a bath. Such a small thing, but such a huge deal for me. Through everything that we have investigated into Kaitlyn’s death, we know that it is possible that Kaitlyn died while I was in the bath on the Saturday morning. The thought of having a bath filled me with acute anxiety; my therapist noticed that my breathing rate sped up and I looked panicked when she even suggested it. So we put together a plan. On day one I had to run some hot water with bubbles and just sit next to the bath (not a full bath, mind you, I do still care about the environment!). Each day a new step would get added. Day 2 – sit with my hand in the bath. Day 3 – stand in it with my clothes on. And so on, until on Day 7 the task was to have a bath. It’s all about brain retraining – teaching the brain that bad things don’t happen when I get in the bath, that it is a safe space. My therapist calls it “reclaiming my life”, which is a touch gung ho for me but I go with it. Now in the case of grief and trauma you get a complicating layer on top – whether or not you actually want to enjoy a bath again. And being a parent whose child has died, my guilt ultimately trumps everything. The person I have always been has always adored baths and found them really relaxing. The post-Kaitlyn’s-death me thinks “what on earth would Kaitlyn think if she saw me giving such a crap about having a bath, when she’s dead??” People say that Kaitlyn would want me to be happy. I struggle with this so much and it has always sparked a rage in me. In my mind, Kaitlyn is a tiny baby; all she wants is to be in my arms, feeding, cuddling. Surely she doesn’t care about anything beyond that, and she can’t have that. My therapist asked me to think about M – how does M respond when I’m sad? Is she happier when I’m happy, or when I’m sad? Then she asked me to think about babies – do I believe that babies pick up on a mother’s distress? Do I think that affects their happiness and wellbeing? Of course I knew the answers. It still isn’t really the same, because innocent Kaitlyn and had her life taken away from her for no reason and that changes everything, beyond all logic and reasoning. But it did at least move me more into the headspace of allowing myself to want a bath, that maybe that didn’t make me a terrible mother and a selfish human.
S and I have both found that our trauma memories have extended beyond Kaitlyn’s birth to cover the whole period of September to January. Last week I needed to travel to the Isle of Wight for work. The whole drive down to Southampton something didn’t feel right, and I couldn’t put my finger on what it was. When I reached Southampton I acciedntally pulled into the car ferry terminal instead of the passenger ferry. And suddenly there I was, right back in September, ready to catch the ferry with S, M and my big bump. We went on the most lovely break when I was 34 weeks pregnant and we were so happy, relaxed and full of anticipation. It was the last time we were truly, uncomplicatedly happy. When I say I was right back there, pulling into the car park last week, I don’t mean I remembered it like a memory of something that happened – I mean I was right back there. It was completely terrifying and very disconcerting. Let’s just say I did not manage my Isle of Wight visit. Every now and then S will say something like “do you remember that programme M watched a thousand times over Christmas? I don’t think I could even look at it now.” The trauma memories grow and grow, and leave us absolutely dreading the upcoming dawning of Autumn.
People say that time heals. With trauma, it doesn’t. It adds layers of complication, confusion, complexity. You struggle for memories that fall through your brain like sand through a sieve – but you know they’re in there, because they impact on every moment of your life. It’s like that feeling you get when you wake from a horrible nightmare but can’t quite remember what happened – mulitplied by a million. From the moment of impact, the brain can no longer function properly, no longer processes or stores memories as it should. Time alone cannot heal that. If someone in your life experiences a trauma, please don’t tell them time will heal. And don’t tell them to get medication. First and foremost encourage them, if you can, to seek specialised therapeutic support for trauma.
Whilst thinking about triggers, I got to reflecting on what it’s been like to interact with others during this time. I’ve been more confronted than usual with views on how I should grieve and what I should believe, and I find that hard. But for the most part, people seem more terrified than ever to talk about Kaitlyn; I am slowly coming to understand that this is at least as much for their own sake as mine, that some people need to shield themselves from the strength and complexity of our pain. I am certain that this is a totally subconscious process for them, and I know that people’s intentions are good. When they see us, they see functioning people on the outside, because most of the time our masks are good enough these days. People don’t want to disrupt that, because they care about us. I get that. And then there is the added complexity of dealing with a mother and a father – I want to talk, S wants to keep his head down and get on with things, that’s just our natural way. But when you really dig down beneath all this, it is also so that others don’t have to deal with our pain, our sadness or our hearts pouring out all over the dinner table. I have to believe that people know that the pain is always, always present for me, that they don’t really think I have ever forgotten, and therefore that they are not really “reminding” me. I have to believe that people know I want my daughter remembered, talked about and celebrated. If I stop believing that, my rage will engulf us all. S and I never forget. We always feel sadness, all the time. I particularly crave the company of people who can sit quietly and hear my pain without judgement and definitely without solution unless they really, truly understand the world of baby loss. Not for hours at a time, just for a few minutes while I simply state how hard things are, so that I can feel like a valid member of society. But I realise now that that is a skill that very few people possess. I am so fortunate to have not just one but a small handful of friends in my life that have this skill and don’t need to run away from their own discomfort. Sometimes, though, I can’t help wishing I could be whole with more people and in more circumstances. On top of all the exhausting things that I have already described in this post, constantly having to pretend for the sake of other people’s comfort is just another shove towards the brink.
And so, I’ve found that I’ve been isolating myself lately. Sometimes words can cut so deep, however unintentionally. Just those little conversational things where people drop in death and dying as a dramatic device or part of a joke. When they moan about having their kids around in the school holidays. When they say with such sadness that their child is growing up too fast – that is certainly sad, but not seeing them grow up at all is a whole different arena. No-one ever means any harm, but sometimes my cortisol levels simply can’t handle the hit. Sometimes I call it out, other times I don’t have the strength and have to just walk away. Over time I started to shield myself by hiding and not talking. But recently I felt strong enough to start reaching out again, opening up again. And I have been rewarded for that by being reminded of some of the really wonderful people in our lives. Some I’ve known forever. Some I’ve known since forever ago and reconnected with recently. Some I’ve known for less long but who know more about me than anyone else. Others I’ve known for mere minutes in the context of my life but who seem to know just what to say or do. I’m consciously trying to focus on that right now, and not on the things that cut. Sometimes shedding can be a good thing too. I’ve shed a lot of stuff that I should have done years ago, baggage I had been holding onto, links to the past that don’t bring me any joy but that I’ve been too scared to let go, just in case. Now I no longer have the space or strength to keep carrying them, and that is a good thing. That is a gift from my child.
I find I have less time to be with Kaitlyn these days, and that’s hard too. I sit in her garden, which I adore. In the bereavement group that I co-established, we are making a quilt in memory of our babies; it will hang in the Butterfly suite and be used at any fundraising or awareness raising activities that we undertake. I can’t sew for toffee, but I made a square for Kaitlyn; hopefully she will know that the wonkier the lettering, the greater the love that went into the making 😊 Straight after Kaitlyn’s funeral we had her casket flowers preserved and framed; they finally came back a couple of weeks ago and have pride of place in Kaitlyn’s cabinet. I continue to fight for improvements in her name, and to share her story at training days and safety events. I made a video at the hospital Kaitlyn was born in; it will be used in training for midwives. M and I have built little Kaitlyn rituals into so much of our day – we say hello to Kaitlyn when we get to the top of the hill we live on. M is really into making up songs right now, and there is always a verse for Kaitlyn. When we decorate a cake, there is always a decoration for Kaitlyn. Always a toy for Kaitlyn, a heart for Kaitlyn on M’s drawing, a character that Kaitlyn would have loved best. M continues to astound me with her warmth and love, and I will be grateful to her for the rest of my life for helping me to keep Kaitlyn present in our family.
I’ve always disliked “lingo.” I remember chuckling when a fellow music student at uni referred to Tchaikovsky’s Symphony No. 4 as “Tchaik 4”, only to then realise that all the students called it that. So began four years of being completely crap at the lingo of the music world. Things on this front only got worse when I joined the NHS – man, the acronyms! If there’s one place that can make your brain feel a little bit funny from all the jargon, it’s the public sector. Ten years in and I still come across brand new acronyms all the time. Personally, I prefer a bit of plain English. Lingo can be helpful, a shortcut, a way for people to identify with each other and talk about their common ground. But it can also be alienating and a little grating to hear the same terms and phrases repeated. Not to mention damaging; researching an undergraduate dissertation in the Linguistic Appropriation of the Third Reich told me everything I needed to know about the power of language in shaping our culture, society, what is acceptable and even what we think on an individual level. A few years ago I got embroiled in a debate with a Partner from a firm of solicitors on a training course. She kept referring to all the leaders in the case studies as “he” when a gender had not been specified. I pointed it out, in what was intended as a light touch sort of way but did spark a reaction. Five minutes later she was hotly declaring that women didn’t need pandering to with such nonsense and she hadn’t got where she had in her career by caring about such stupid things, while I just as vehemently asserted the importance of language in shaping a paternalistic/feminist/egalitarian culture (delete as appropriate). Thankfully we broke for lunch and that was the end of the discussion.
The world of pregnancy and parenting forums is rife with a baffling array of abbreviated lingo, most of which I’ve never bothered to learn. If you’ve never come across this, go and spend half of an hour of your life (that you’ll never get back) just bouncing around mumsnet. Make sure you take a glossary. If your head isn’t entirely spinning by the time you’re done, I take my hat off to you.
The world of baby loss also comes with its own lingo. In a way it is entirely harmless, it brings people together, bonds us in our pain and saves us from having to say or write twenty times a day the brute fact that our children died. Sometimes though I do wonder if the lingo truly serves us as a group if we want to mainstream the conversation around baby loss. And sometimes the lingo can feel alienating to those already “in the group”, so to speak. I particularly struggle with the labelling of various children depending on the order of their birth in a family. Any children born prior to a baby dying are referred to as “sunshine” children. In a way that’s fair enough – M has always been our sunshine, long before we even thought about trying to have another child. But to those parents who lost their first child, it can’t be nice to think that none of their children can be labelled “sunshine” babies. It’s a term you only apply to your child after tragedy has struck, which doesn’t sit comfortably at all. M’s worth has always been her inherent worth, we have adored having her in our lives from day one and her inherent worth does not change because we lost her sibling. She has always been as precious to us as she is now.
The child that died is called the “angel” baby. Now I’m not religious and I don’t believe in angels. I don’t think of Kaitlyn as an angel, up in the sky with wings and a halo; I think of the energy of her soul all around us in the atmosphere, no longer bound here by her body. The idea of her growing her angel wings sends the uncomfortable kind of tingles up my spine. So I struggle with the angel baby label, and the accompanying ‘angel mama’ label for mums. That said, I have utterly failed to come up with anything better. If we’re not angel mamas, what are we? Loss mums? No. I guess I tend to stick to ‘bereaved parents’. Not exactly snappy, but passes my plain English test. I’m not altogether sure Kaitlyn needs a label per se. If I’m explaining to someone for the first time who Kaitlyn is, I would never use the term angel baby, and if I’m talking to someone I know then they already know who Kaitlyn is. But I do wear my angel mama clothing with pride. It raises awareness and opens up conversations about Kaitlyn and baby loss; despite my plain English preference, I cannot very well go around wearing a t-shirt that says “My baby died.” Maybe one day society will be sophisticated enough at handling grief for that to be ok, but today is not that day.
A child that is born after the child that died is referred to as a “rainbow” baby. This is the one I struggle with the most. Having miscarried a much hoped for rainbow baby, I can’t bear the sound of anything hopeful or redemptive, it quite literally makes me want to scream. Right now I find it hard to believe that the “storm” of losing a child ever ends, and the birth of another child can’t possibly remove the loss of the unique and loved child that died. This is the term that I fear must strike the most sadness and alienation into the hearts of those who never go on to have a living child after their loss. It’s a term that hurts when it feels like there is no rainbow on the horizon.
It doesn’t put Kaitlyn in the right context either. Kaitlyn is not my “storm” and her death isn’t a storm. Storms pass, and afterwards the weather clears, the devastation is surveyed and rebuilding efforts begin. That doesn’t at all describe our experience. When Kaitlyn died, I shifted forever onto a different plane of existence. There is no rebuilding – things can never be rebuilt to be what they were before. There is no feeling of moving forward – we move because time gives us no choice, and M has a life that she deserves to live to the fullest. Kaitlyn’s death wasn’t a storm, it was some sort of strange sci-fi device that knocked me into a parallel universe, where I can still see everyone, I occupy the same space as them, but my experience of the world is forever altered, the feelings in the very core of my being are forever altered. The world has lost its colour and at the moment I could well believe that it will stay in both monochrome and monotone forever.
Kaitlyn is also her own rainbow. Her death is what shattered us, but Kaitlyn herself – her presence, my pregnancy, holding her in my arms – brought sunshine and rainbows into our lives. Every time I see a rainbow I say hello to Kaitlyn, because every time I see any form of beauty I think of Kaitlyn. My pregnancy with Kaitlyn was the most contented time of my life. M became a big sister and I saw a side to her that I could not have witnessed without Kaitlyn’s presence. S and I have two wonderful little girls, and we could not be more proud of that fact. My pride in Kaitlyn is fierce, that she thrived for so long despite a dodgy placenta, that she brought beauty and ignited a fire in me that will burn forever. Even the uplifting beauty of a brilliant rainbow in the sky cannot come close to describing what Kaitlyn brought to our lives; she is brighter than the diamond that shines amongst the mud and graft and quagmire of living with her death.
Perhaps this language has been created to counteract the awful medical terminology we are confronted with on the death of a baby. Anyone who has ever been asked how they would like the “products of conception” to be “disposed of”or been told that someone is very sorry for the “fetal demise” definitely needs to resist a strong urge to start talking about angels and rainbows. But I wonder sometimes if softening what happened is really right. My baby didn’t grow her angel wings. She died. In our case she died because once a pregnancy is labelled low-risk it’s barely monitored, because capacity problems overtook a woman’s need for support and because socially we seem happy to accept that these things just happen sometimes or that things weren’t meant to be. I’m not sure that talking about angels and rainbows is going to help change these systemic and cultural issues.
Plain English is what’s needed. I did not miscarry – my baby died, or did not manage to live in the first place. I would like my much-loved baby to be laid to rest in a caring and respectful way please. I did not “have a stillborn”, I had a beautiful baby and she died. It is tragic, it should be talked about, it is not just “one of those things.” My baby’s life was meant to be. If we cared about babies dying as much as we care about Brexit, we could one day achieve a world where only the smallest minority of babies died under a small set of circumstances. Some people would argue that’s the case now – they are wrong. I have yet to tell someone about Kaitlyn without hearing “it happened to me / my sister / my best friend too.” Almost everyone seems to know someone who has lost a baby later in pregnancy. I guarantee everyone knows someone who has lost at least one baby earlier in pregnancy, even if they don’t know who that is in their circle.
I owe it to Kaitlyn to speak the truth and to not shy away from the facts. She lived. She is loved. And she died. I will say the phrases “Kaitlyn was born” and “Kaitlyn died” until people no longer run away from them. We have to shape our culture and influence society by speaking the facts in a clear, non-medicalised, unambiguous way that others cannot hide behind.
A Keepsake for Kaitlyn 