Finding the Words – How to Talk about Baby Loss

This week I had the pleasure of being a guest on the Victoria Derbyshire Show to discuss my experience of still birth due to medical negligence. Here’s the link to the programme, the segment starts at about 16:00 minutes in: Link to programme

While I often talk openly about my experience of losing my daughter, I write about it here and in articles for the media, I have posted You Tube videos and written a lot of poetry about the experience, I very rarely talk about my experiences with clinical negligence and the effect that it has had on my life. Partly this is because people have very strong opinions on the NHS and if I talk about it in the media I tend to get quite a lot of negative comments, no matter what I actually say. The Victoria Derbyshire show is thoughtful and I was treated sensitively. It’s not the type of show where different opinions are pitted against each other, so this was a really good opportunity to speak up for, not only parents who are at risk of losing their babies when mistakes are made, but also NHS workers who aren’t being given the opportunity to work effectively due to circumstances like funding, staffing and a lack of protocols. One of the things that was brought up on the programme was the lack of training available and how this differed between hospitals. There’s a real need for training that is the same not only across different trusts and hospitals, but also within those hospitals too. In my own experience I can say that I was given different advice from my community midwife, my GP, the out patient clinics and the consultant, which led to a very confusing situation, but also, long term meant that it was difficult for robust communications to be present between departments and different hospitals. I believe that had better communication been present, among other factors, my daughter would have made it through the delivery and would have lived. Perhaps she’d be alive now, she would certainly have had a better chance. It’s important that we address failings like this, it’s also important not to demonise the NHS staff, or the hospital, or the NHS as a whole. I worked as a microbiologist in the NHS for thirteen years and can assure you that, as I said on the show, no one in the NHS is out to do a sloppy job, or let their patients down. I have never met another NHS worker who didn’t want to do the absolute best for their patients, but if they don’t have the tools to do that, how can they do that?

Without sinking into another maudlin post, I will say what I said on the show. The effect of losing my child in this way has been life changing, literally. Apart from the obvious things that you can probably imagine – the devastation at losing a baby, the absolute devastation of losing our only child, our IVF baby, our miracle- there are other effects directly associated with clinical, medical negligence. I have changed my life almost completely in order to cope with the effects of PTSD, I have minimised the amount of triggers (I hate to use the word trigger, it’s so over used, but that’s exactly what they are) in my life, in order to live a life that is comparatively normal, to be able to enjoy my life again I have left my job, I have less contact with friends from my old life (some of which has been their choice, some mine – someone this deeply affected is often hard to be around and I understand not everyone can deal with that) I struggle to be around pregnant women, not so much because of envy (which is a completely normal reaction, incidentally) but because of the utter rising fear, the hyper awareness and the associated anxiety which regularly rises into bad panic attacks, due to the fear of something being wrong with their pregnancy. It’s ruined friendships I might have other wise enjoyed. It blocked me from being able to enjoy other people’s pregnancy experiences. I worry about their pregnancy, the baby, them so much that it swamps everything out. This of course runs parallel with the sadness that my baby died, and I would dearly love to be pregnant again and be successful in having a family, but partly due to the anxiety and depression that now goes hand in hand with IVF and pregnancy, and partly because our chances are so poor, it isn’t going to happen. By the way, I’m saving the ‘why I am not adopting’ post for another time.

There are other effects too, I don’t trust doctors, I always have to have every little bit of information about any medical situation, I need all the details to feel safe. I have to have second opinions, I have to question and question everything any doctor says, it goes on and on. I worry constantly whenever friends need medical treatment. It is an exhausting sort of anxiety, and very intense. So now I work for myself, rather than worry about being around that, which is fairly unavoidable in a hospital environment.  And to be fair, I would have always ended up working for myself, I think, and I absolutely love it. I always wanted to be a writer, full time and I am now, so that’s great. Go Me! But I don’t think I have been in the hospital which I used to work and who let us down since I had one of my miscarriages and you can only imagine how stressful that was, to have a missed, or silent, miscarriage induced, with all the anxiety around it, added to the fact that actually that went wrong too. It’s too much. I went for a scan at Hull once, a few years ago, because I was having some investigations for a uterine problem. It should have been done in my local hospital, a quick, easy out patient appointment. The scan took four minutes. I drove all the way to Hull (about an hour and a half away) rather than go to or local hospital. I could go on and on with examples like this, such as in one of our pregnancies; which sadly ended in miscarriage anyway, when we were putting a plan together for my care the consultants advised that I could have all my treatment in Hull, and spend time as an in patient there from 24 weeks until I felt safe, but in an emergency situation I would be taken to our local hospital. I strongly considered moving house.

I’m not asking for sympathy when I write this stuff, by the way, but it is vitally important that we talk about failings in the healthcare system, and vitally, vitally important that we talk about baby death. People do experience the death of their children, people do lose their babies and it is isolating, pretending that it isn’t happening or hasn’t happened doesn’t really help anyone. We don’t talk about grief in this country, we are a nation so clammed shut by the fear of offending the bereaved, that people would rather hide in a cupboard than talk to someone who is bereaved. (true story). yet it’s only by talking about it that we reach a point as a society where that taboo dissipates and people can be supported more effectively. By talking about problems, problems can be addressed, change can happen and no one should have to go through this. I wouldn’t wish it on my worst enemy.  I think now, eight years on, I could probably visit someone in that hospital if needed, but I would be in pieces inside. I can visit my GP now, but I always, always leave it until there is no other option and I’m always terrified by what’s going to happen, always hyper aware over what they are doing, what they are not doing. It takes quite a bit of preparation to get from my house to the GP if I need to go there, despite it being a seven minute car journey, because of the anxiety. These are things that my family don’t really know about, my friends probably don’t really know how bad the situation is. But it doesn’t affect me 24/7 anymore. And though I still struggle with it all, I do not wish to be ruled by it all, like I say, I have adapted my life in order to deal with it. And it is a lot better than it was, but it won’t go away, this is pretty much my life now. I used to have terrible dreams, I rarely do anymore. I used to have terrible… well I guess you’d call them flash backs…where I wasn’t present in the moment and an hour or so might have passed before I realised I was standing in a supermarket, or sitting in the car and had no recollection of time passing, because I’d been time travelling inside my own life to my daughter’s death, or more likely the weeks and days leading up to it. I became adept at carrying on conversations whilst watching her death play out repeatedly in my head. It was an incredibly unpleasant time. This still happens sometimes, a lot less frequently, it has happened this week a bit after the TV appearance, but that’s what you might call a trigger, and it doesn’t last, I have had a mint week in a lot of ways and my life is very good at the minute, I am incredibly happy with where I am. I have a select number of good friends who support me, who even put down what they are doing to meet me and normalise my life a bit when I need it, who can ground me and pull me out of the time machine that I get trapped in, and mostly my life IS normal. I tell you what, you don’t know how much normality is craved when it’s not present! I woke up yesterday and sat and read my book in bed and wrote a poem and it was blissful, without anxiety or fear and God, I would just live in that little pocket of time forever if I could.

One of the things that has made the situation bearable is when people have asked about my daughter. When they asked about her as a baby, as my beautiful baby, and not as if they were asking about a car crash. The tendency is to treat baby loss as something similar to a disease or an accident, a terrible accident that has been survived. But there is another part to baby loss, which I think makes it unique, in that yes, the trauma is there, but on the other side of the trauma is the love. I don’t get to talk about my pregnancy or my baby because her loss is a trauma, so it’s often as if she didn’t exist. It makes it, understandably, a difficult set of emotions for other people who haven’t experienced it to deal with, people struggle to get their head around it. People don’t know what to say, and that’s understandable. But let me simplify it, without the need to write a ‘ten things you should never say to a..’ or a detailed guide book to the situation. One thing that you can say is that you are sorry for that person’s loss. That’s it. If you want to be a total star, say I’m sorry your daughter/son/baby died’ If you want to be the best friend ever ‘I’m sorry —insert name here— died’ and if you want to break the taboo, ask them what their baby looked like, ask them what their name was, ask them what they weighed, ask to see pictures. But don’t cross the road to avoid talking to them, don’t change your break time to avoid sitting opposite them in the rest room. I didn’t fit in anymore when I went back to work after Matilda died. I had some friends who were brilliant, and some people I barely knew who asked to see her picture. But people I’d know for years avoided me, literally hiding or ducking down corridors or across car parks rather than say ‘I’m so sorry for your loss’ and risk me crying because my child had died, or risk themselves crying.

The brilliant charity SANDS have been leading a campaign recently about what to say to a parent who has lost a baby, this includes FATHERS. Men lose children too, but are expected to man up and get on with it all. Don’t forget to speak to them too.

SANDS has launched this little animation which is really very good, it sums up my own experience of returning to work perfectly. Please watch it, don’t be afraid to watch it. And by sharing it you give people a chance to understand how to treat us.

I’ll leave you with one thing, from an entirely female point of view: I am so pleased to see the reality of motherhood being discussed in the media and in art, I’m a poet myself so it’s bloody brilliant to see experiences of motherhood that don’t conform to the stereotype that the cult of motherhood would have us believe was the norm, there are poems about it winning competitions, collections about it gaining wide appreciation, women are now able to say: actually, I really struggled with being a mum’ and that is brilliant. But one area that doesn’t get a lot of air time is the experience of motherhood that I have had, and that many other women like me have had. Stillbirth, neonatal death are experiences of motherhood. My baby is still my baby whether she is alive or dead, I love her, I loved my pregnancy and it still made me feel like shit, I hated my fat ankles and even more hamster-ish cheeks and I loved my bump and I love my baby, loved shopping for her. I had an experience of motherhood, it was different, it was sad in many, many respects, but it was also full to the brim of love. Mine is not just a story of loss, it is a story of love.

 

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