DISCLAIMER : this is long and random and I apologise for typos. I type quicker than the iPad can cope with…
So, I’m sat in a random Starbucks in Stoke waiting for N to finish a lab day for her distance learning uni course. We came together as spending the day apart like that, going somewhere new and tackling a day of electrical engineering was probably a bit much for both of us right now.
I walked into town from the University – I should have driven, but we parked in a train station car park to have breakfast and when I went to pay it was NINE POUNDS. I was not going to pay nine pounds for twenty minutes… If I was going to pay for the whole day, the car was going to enjoy it, in the cold and snow, for the whole day!
So I ventured on a walk to town, courtesy of Google Maps. And it was snowing, at first it was pitiful snow. Too light to barely notice. This is England after all, not New England. By the time I got half way, and hit a park to stroll through on the way, it got heavier. Or at least the wind got faster so it felt heavier. Don’t worry about getting nice idyllic images of a snow filled English park in your head. This is the Midlands, and a city centre. It wasn’t the prettiest of snowy backdrops. It was complete with overfilling bins providing the pigeons with breakfast. Lovely.
At this point though, I had committed. Luckily, I actually had a hat, gloves and a scarf. Which is pretty shocking for me, dressing for the weather isn’t my usual style. Google maps is one of those things that takes you the way it feels is best, but never really feels the most logical as you are doing it. I’m sure, in your own stomping ground you wouldn’t think twice, but in a new city, you spend a lot of time questioning it and draining your battery checking the route.
Soon enough, I found the more tourist friendly looking sign posts and knew I must be close – and ended up at the bottom of town. I’m sure ‘the bottom of town’ looks the same in every industrial town centre. Random takeaways, misplaced posher shops next to dodgey phone shops and a greasy spoons fresh from the ’90s. This one even had the ‘home of Peri Peri chicken’, Momos. Although, I’m going out of the limb here, and going to suggest the idea came from somewhere else…
Finally, I turned a corner, and the shopping centre was teasing it’s warmth at me. Don’t you just hate that dress for outside, but need to do a striptease as soon as you are indoors effect? This is why I never dress for the weather. I always dress for indoors. I’m pretty certain I came into the shopping centre through the back door, as the further through I got it turned from the kind of place with Poundland and Supercuts, to Debenhams and Topshop, and by the time I found the actual front door, I was in the company of Pandora.
So here I am, killing time in the safety of Starbucks with its classic musical backdrop and wooden flavoured tea.
I’ve been mulling a few things over in my moments of okay-ness lately… And might as well empty them here.
ONLINE SUPPORT
This little club of ours is great, I am so pleased I found it and made the decision to venture into the online world of support. To feel less alone is such an antidepressant in life. You only find it though, if you go looking for it. I hope those that need it and want it, do go looking. It really is those that put the stories out there that create that feeling of being less alone. It’s not quite the same as a support group or counselling, although I appreciate you would get a different type of support through those avenues. What I like about this form of support, is the 24/7 nature of it. You can be sure you’ll find something to read, comfort or inspire whenever you need it. The Internet can always backfire though. However, I’m sure that through most of our pregnancies, and for those who were trying to conceive for some time, you soon learn the best ways to approach online support systems for yourself. I always remember one of the more, er…, harsher old-school feritlity nurses telling be to stay clear of Google and messageboards, because all of those ladies are nuts apparently… Everything in moderation I guess, as with anything in life.
SUPPORT FOR FAMILY MEMBERS
Lately, I have been thinking though, is there a little club out there in real life or the online world for others experiencing this alongside us? The grandparents, aunties, uncles, cousins, friends? I know they are all hurting and struggling through this alongside us, and we can all do our best to support each other, but I do hear quite a bit from those on the peripheral of this situation that they can’t burden us with their hurt, and equally feel as though they shouldn’t be struggling as much as us – granted its not a competition, but I guess it does feel like there is a natural hierarchy to the depth and level of hurt people should feel? But, emotions don’t work that way though, do they? They don’t look around and find the most logical place to sit in the situation. There do not discriminate, they just take hold and run, pulling people in every which direction until you find a way to let go, keep up or make friends. Since the early days of this happening, I really felt for the family around us. It sounds so silly for me to say, but I had such deep compassion for how our parents and siblings must been feeling. I cannot imagine watching my sister go through this, if the roles where ever to be reversed. To suffer the loss of a family member, and watch your loved ones hurt in this way. It’s like a double blow.
So where do the wider family gather support from? I know they are more than welcome to attend SANDS groups and such like, but I can’t help but think the same feelings of ‘right’ would surface, being amongst parents? I may be wrong, but I do understand that feeling and question whether it would be better for support to come from, and with, fellow family members who are fully able to identify with the feelings? Is there anywhere their voice can be heard amongst those in a similar situation? I would love to find a way to give those people a voice in all of this.
EMPLOYERS
My other thing I have been mulling over is employers. Now, whatever the topic, this is always an interest for me (I have an Occupational Psychology degree and have dabbled in HR). I think employers and the workplace has a difficult role to play in all of this. It’s for sure an unpracticed situation for people. What is the best way to approach an employee post-stillbirth? Radio silence? Is there a duty of care? Do they agree with the entitlement for leave still? What really is Line Managers discretion in a situation that they may have never come across beforehand? Should the employer bother the employee whilst on leave with things that affect them?
We haven’t been short changed by our employers at all, but equally there will always been areas for improvement to make a situation easier, less stressful for everyone involved. For example, upon Ns return we learnt that they processed her leave differently to what we expected. Ultimately it not a big deal in the grand scheme of things, but I do feel we should have been informed of this – particularly as their reasonings for doing so were incorrect and it has an impact on my leave also. However, I can understand why they would not want to contact us. With returning to work, is there an expectation that you’d just take a few weeks off and crack on back to work? How do you deal with the person once they are back to work? This is an ongoing mental health issue after all, and an environment that you are in for eight hours a day needs to be able to facilitate good mental health support, however that may be. For some there’s also elements of trauma that need to be acknowledged. I best not get started on mental health support though, I could rant and rave all day on that one… But this is an issue for both parents, not just the birth mother and I fear that the partners get a massive raw deal in all of this. Workplace stress is shit at the best of times, let alone when you have to deal with this. I’ve read quite a few people change jobs after this, the memories of a place they so joyfully left just months before being too hard to overcome. Alternatively, is there a logic for being around people who are fully aware of the situation, who can support and know you, and who also knew the person you were before? I felt a greater desire to connect to work friends after this happened than I expected, as I felt that they had a link to Leo. You spend more time at work than anywhere else (a somewhat depressing thought), and for the short time Leo was alive, he was at work with me. Hearing all those voices, and in that environment. It is a pace forever linked to him.
DONT SCARE THE PREGNANT LADY
The other thing that keeps going round in my head, and I want to look into more at some stage, is the level of information you are given during maternity care in regards to prevention of stillbirth and miscarriage. Virtually within the same breath of telling you there is no heartbeat, the doctor jumped straight to telling me this was not my fault. That I couldn’t have done anything to prevent this. I appreciate the sentiment and I’m sure she is true in part, but there will always be a sense that I was carrying that baby, it was my job to look after him, and yet he died. No matter what a doctor says to you, loosing that feeling of guilt or responsibility for this situation is incredibly difficult.
The word stillbirth, or miscarriage was never uttered in any antenatal appointment that I had. Whilst I was quizzed every time on the symptoms of pre-eclampsia and they asked about movements and told me to call the MAU if his pattern changed. .. I never felt fully empowered or informed. Granted, this is in hindsight speaking. If Leo was here, I wouldn’t have a second thought about my care.
I had however heard of the now Kicks Count charity from the celebrity endorsements. So as soon as I first felt those little flutters, I looked it up. No disrespect the to the organisation, but I still didn’t feel fully in control of understanding what was normal and what wasn’t normal. Ultimately, I gather this is because there is no normal – it’s just what is normal for your baby. Coupled with all the ‘old wives tales’ everyone tells you, it is incredibly hard for mothers to know when to be rightly concerned. Leo had a normal pattern of having quiet days every 10-15 days which I always mentioned at every appointment, this was deemed acceptable and I kept an eye on it. Maybe I underplayed it, I don’t know. But surely, they should probe and check, regardless of how concerned or not concerned I appear – I am not the trained expert, after all. It was my first pregnancy. I’d get concerned every time he would have a quiet day but I never acted acted on it, I’d chill and he’d pick up again. Kicks Count often share stories of babies saved by mothers acting on their advice and the confidence that their camping gives them. “If I didn’t go to the hospital that day, things could have been really different.” They claim. I’m glad they were different for those people. But it does make me feel like the doctor who said I couldn’t have prevented Leo’s death was lying.
My advice was to always phone the MAU if I was concerned. Im not suggesting this is practical in today’s NHS, but our MAU is 40 minutes away at the main hospital. Ideal obviously, should you need any level of help whatever may or may not be wrong. But in the culture of British politeness and an overstretched NHS and not wanting to be a nuisance, how confident do people feel about going to the MAU for every little concern? For me, a drop in, no appointment clinic such as the Health Visitor operates would be more likely to get people going and empower them to go. Who knows if I should have checked every one of Leo’s quiet times – I did always feel like it was a ‘crying wolf’ situation from his part. At what point do I know that his quiet day isn’t ‘normal’ anymore. I found out on 14th January.
Ultimately, it comes down to information. But it seems giving the pregnant lady information about her baby dying is scary. Shh, don’t mention the word miscarriage. Don’t tell anyone you are pregnant until after 12 weeks because ‘something might go wrong’ – that something is miscarriage. It’s a word. It’s in the dictionary. It’s not Harry Potter people. Say the scary word! Say it out loud. Babies die. People have miscarriages. People have miscarriage after 12 weeks too. Peope have stillbirths. They give birth to babies who have died inside of them. It is not taboo. Making it taboo is damaging and dangerous.
I wish I had heard of MAMA Acadmey whilst pregnant and their MAMA Wallets. I think this is a fantastic idea. Look them up. If I am lucky enough to be pregnant again, I will get one. I want to get one for everyone in my community. I want my Medical Centre to have them. I want to send one to every friend who gives me happy news of pregnancy. Women, families, should be informed. Mid labour, high on gas and air, the anaesthetist took consent for my epidural. I had to confirm I understood the risk of paralysis. Fucking scary when you are mid labour, and being told to stay really really still or else you may be paralysed. When I had embryo collection, I had to sign consent and hear all the different risk factors. Why on earth are the risk factors not discussed in pregnancy. Inform people, properly. Don’t shy away from the shit stuff. It is real. Obviously, there is a place for sensitively discussing it but this doesn’t meant it should not be discussed.
In hindsight, I do think too much of the focus is on feeding and sleeping. Between my midwife appointments and NCT – there wasn’t a great deal of focus on managing a healthy pregnancy. Yes, you get the tick boxes ticked, but in a culture of you’re pregnant not ill from everyone, you do feel you need to just man up and get on with it. My old school GP did tell me when I went regarding pelvic pain that people never used to complain about this… NCT comes way too late and they focus on labour onwards. Luckily I had that session before Leo died, or I would have been really ill informed to make decisions about my labour, which would have made the whole process even more scary.
If I am fortunate enough to have another shot at motherhood, the type of motherhood I am wanting to have, I will make sure I am more informed, I will speak up more, and I won’t be afraid to be a nuisance. If this maternity budget malarkey comes true, I won’t be using for a home birth – I will use it for whatever is appropriate at the time to ensure I can deliver a healthy, living baby. That’s the kind of positive birth I’m after. I will do my own research. I will not take the professionals word for gospel. I will not be complacent. I will do everything in my power to give Leo a brother or sister, a living brother or sister. Stillbirth will not define my motherhood.
I feel I have massively rambled, thank you if you have stayed this far. I don’t blame you if you had to have a snooze or a coffee half way through. This is just some of the random musings in my brain whilst I’m killing time. Maybe one day I’ll look into them more. If you do know of any resources or support for some of the things I’ve mentioned, please do share. I’d be really grateful.
Best go get the wife.
The Legacy of Leo 