Sunday, 25 October 2015

The myth that "complications are rare"

Last week was Baby Loss Awareness week. I planned to write something pertinent then, but struck by yet another Duckling-gifted mystery virus, didn't quite feel up to it in the end. So I'm writing it now, albeit a few days late. As I have mentioned before, I have had two miscarriages, both of which were hard to handle. However, what got me through (after great support from Drake and my family) was the knowledge that, statistically speaking, miscarriage was a comparatively common occurrence. My mother had lost a baby before she had me, so while very upset, I was half way prepared when the sonographer told me there was no heartbeat, or second time around, when I started bleeding.

Unfortunately, not everyone who encounters pregnancy problems has a mother who has been through the same thing. So many people I know (women and men) have been taken by complete surprise when something has gone wrong. And I know a lot of people for whom things have gone wrong.

During my seven years at the organisation I work for, five people have lost babies after 12 weeks (that mythical 'everything will be fine now' cut off point), including one whose baby died shortly after birth due to oxygen deprivation.  Three have had miscarriages (myself included) though I suspect there are many more out there I don't know about. One was so heartbroken by her loss at 42, she decided not to try again. Two can't have kids at all. Admittedly we employ an unusually high number of women of childbearing age, but this still seems a lot.

In my personal life, the list is similar. One friend lost two babies after 20 weeks and decided not to try again. One had a stillbirth at 24 weeks and then a miscarriage, and is currently debating whether she has the mental and emotional strength to try for a third time. Another took over a year to get pregnant, suffered a miscarriage, then took another year to get pregnant again (though she now has a healthy boy, albeit after developing sudden onset eclampsia during the birth). One had a very premature baby who later died. She then had a miscarriage at 16 weeks. She has one healthy son, but at nearly 40, is not trying again. Another has had multiple cycles of IVF and two miscarriages (no baby yet) and a yet another took over 5 years to get pregnant due to endometriosis, though she does now have a healthy little girl. Most recently, one of my best friends had a stillborn girl at 39 weeks, only finding out her baby had died when she went in to be induced. She is now pregnant again with all fingers and toes crossed.

Currently my sister is pregnant with her second baby too. Bar a slightly challenging birth, her first pregnancy went smoothly and her daughter was born happy and healthy. Her current pregnancy is of course not proving so straight forward - her baby was noted to have dextrocardia on her 12 week scan, which essentially means its heart is pointing the wrong way. This may not be a problem if her next scan shows all the baby's organs are reversed (we know its stomach is, but the sonographer couldn't see the others yet) as essentially the body will work normally, just the other way around.  If some organs are not reversed, or are missing altogether, or there's a problem with the heart, the prognosis will be much more serious.

If I really think about close friends and family of my generation with kids, I can only think of one who has completed their family without any serious issues getting pregnant, staying pregnant or giving birth. One. That is honestly it. 

So how can things go wrong so often, without it being more widely acknowledged?  How can so many people go through so much pain and heartache, not just once, but twice, or more times, and have their circumstances considered 'unfortunate but rare'. Part of me feels that I am a bit cursed; that being my friend is ill advised if you want to start a family, or complete it without issue. Rationally, I know that's not the case.  I know so many people who have had problems because all my friends are currently of sprogging age, and having had issues myself, I probably get to hear about more people's baby-related woes than I might do otherwise. More significantly though, the  rate of complications seems high because problems are really NOT that rare.

When you first get pregnant, your chance of miscarriage in the UK is about 20-25%. Of having a premature baby (live birth before 37 weeks) about 7% and of having a stillbirth (loss after 24 weeks), around 0.5%. About 2% of babies are born with birth defects each year too. And this is before we get onto the myriad possible birth complications. We're not talking one in a million risks here, or even one in a thousand. When you start adding up all the things that could go wrong in each and every pregnancy, it paints a pretty scary picture. Whether enough is being done to reduce these statistics is a debate for another day (essentially the answer is 'no' though). My question is why so many women (and men) are so utterly unprepared for an outcome other than a happy, healthy baby? 

There are a lot of reasons. Most obviously, a couple might simply chose not to think about it because, if you're going to remain stress free during pregnancy, you CAN'T be forever pondering the things that could go wrong. It's too painful, and largely fruitless as it won't change the outcome. It may be that couples receive false reassurance from friends, family or medical professionals.  It may be that they're simply uninformed.  They don't have the opportunity or desire to read much, don't know anyone who has lost a baby and have only ever seen pregnancy and birth depicted in a generic 'bump, birth, baby' way in the media (soaps and dramas have a lot to answer for). It could be that they simply don't believe it could happen to them because they're healthy and normal, and how could their healthy, normal body possibly generate a baby or pregnancy that isn't healthy and normal too? I know that's a thought that crossed my mind.

I'm not advocating that we scare all pregnant women by listing all the many things that could go wrong at every midwife appointment.  Sensitivity is vital, but pragmatism and honesty in response to women's questions would help too. Some of us are fragile, and yes, you are more emotionally vulnerable when pregnant (though personally my pregnancy emotions were nothing in comparison to my emotional vulnerability now I've had a child) but most of us are reasonably intelligent, resilient beings who want people - particularly doctors and midwives - to be straight with us. Wider societal recognition would be useful too. A lot of people talk about the 'taboo' of discussing baby loss and pregnancy problems.  I'm not sure it's necessarily taboo (a quick Google will tell you there are A LOT of people talking about it online) but it is very emotive, so no, I don't tend to bring it up in normal conversation because I don't want to make my conversational partner cry (or myself well up for that matter). That doesn't mean we shouldn't be recognising the difficulties women go through to get pregnant, stay pregnant and have a healthy baby though. Better (and more realistic) representation in the media would be a good starting point. Eastenders was widely praised for working with Sands to accurately portray the loss of Shabnam and Kush's baby earlier this year. Many people declared it too sad - because yes, stillbirth is incredibly, incredibly sad - and no doubt for many parents who have lost babies, it would have reawakened deep feelings of grief. If we're not upfront about it though, society remains unaware of how common it is (0.5% equates to 17 stillbirths in the UK every day) and less able to support those who suffer a loss. Knowing you might lose a baby doesn't necessarily make it any easier when it happens (I deliberately hadn't made any plans, bought anything or told anyone except close family when I suffered my losses, which did help me, but this is impossible once you're visibly and openly pregnant), and it doesn't make it fair when it happens, but if those around you are aware and informed, they can be in a better position to help, and not say totally the wrong thing.

I would love not to have so many friends who have had problems. Every time I receive a call or text telling me sad or worrying news, I think "No, please, surely not AGAIN?!" I feel for each and every one of them, and it makes me that bit more terrified of trying for a second baby each time. But I also know that should I go for a second,  and should tragedy strike again, I will not be alone. I can turn to pretty much any one of my friends and share the pain that is inevitable when our attempts to create new life, the very purpose of human existence, are so cruelly crushed. This is why it is so important that people know that complications are not rare. It's not their fault: the human reproductive process is actually massively flawed. But because it is, you are never going to be the only one to be facing the heartbreak that these flaws can bring. Chances are, if you just talk about it openly, you'll find that a surprising number of people will be able to relate to your story in some way. It's not a grim club you ever want to be a part of, but if you're ever in the unfortunate position of having to join, you'll be glad it's there.

Wednesday, 14 October 2015

Pushchair prejudice

Babies cannot walk, and thus need to be transported by other means. Toddlers, while they can walk, go veeeery slowly, are prone to running into oncoming traffic, getting tired at the drop of a hat and requiring a "Mummy cuddle" all the way home. Human evolution has not been kind to us parents in this respect. Thankfully however, it has given us the intelligence to invent ingenious contraptions to save our aching arms. Slings and baby carriers are the most traditional (and when Duckling was smaller I did use them A LOT as they had a magic calming effect and kept my hands free for doing other stuff). However, they're only practical for long-term use if you have a strong back (mine is knackered now), a single child to care for, and you don't have to carry eight bags of shopping home. Love 'em or hate 'em, in most other scenarios, the pushchair / pram / buggy / stroller / baby carriage or whatever you want to call it is hands down your best option.

Die hard attachment parenting fanatics aside, most modern parents use a pushchair in some form or other at some stage, yet it is still incredibly common to see those parents struggling and failing to push said pushchairs along cluttered aisles, up and down steps and in and out of crowded buses in even comparatively modern urban settings. Why is the humble buggy so badly accommodated? Is it because they didn't have them when most town centres were built? Well no, not really - wheeled baby transportation devices have been around since the 1700s, and popular as the primary form of baby perambulation in the Western world since the early 20th century (thank you Wikipedia). Few town centres are exclusively pre-Victorian, and even older shops and public spaces can often be rearranged a bit to better accommodate pushchairs. Is it because they're much bigger today than they once were? Maybe, if you compare a modern travel system style buggy or a jogger to the ubiquitous fold up Maclarens of the 1980s. But then a) Maclarens are still everywhere even today and b) even the biggest of modern pushchairs are still smaller than the behemoth prams of yesteryear. Is it because planners, shop owners and public transportation officials are enraged by pushchairs generally and ignore them out of spite? More than possible - buggies are, after all, awkward and bulky challenges to health and safety that contain food hurling noise machines. Plus the parents who push them are often sleep deprived, verging on a breakdown and wildly distracted by all the throwing and shouting and as a result steer them like deranged myopic drunkards. I include myself in this description.

If I had to put my money on anything though, I think one of the main reasons pushchairs are so reviled (or at least so grudgingly accommodated) is because they're pushed primarily by women, and contain children. Now I believe in balanced arguments and I don't think it's healthy or accurate to boil everything down to misogyny. The world is more complex than that. I am quite sure that a lot of inaccessibility is genuinely down to poor planning, simple thoughtlessness, old architecture and lack of funding or scope to change things. Nevertheless, there is a lot of dismissive eye rolling reserved for Mums and their charioted offspring. While there are many lovely people out there who do help, when I'm struggling with my buggy, I quite often pick up on a vibe of "bloody woman driver"*, even where the issue is patently not my steering skills (for a change). A bus driver once looked at me like I wanted to bring a bomb onto his bus when I politely enquired if there was room for my pushchair (there was, but he told me no, not unless I folded it. I walked instead). Then there's the clothes shop in my local town that has all their kids stuff upstairs. It does have a lift (JUST big enough for a person and buggy), but this is currently broken. In fact, it's been broken for over three months. How they're selling any baby clothes I don't know - when I asked if there was anywhere non-obtrusive I could leave my pushchair and shopping so I could carry Duckling up the stairs, I was met with a shrug and a "not really...".

To be blunt, as a women, mother or not, your practical concerns are not really a priority. Amusing / eccentric / tedious / laughable / daft, yes, but important and worth spending real money on, not often. You are expected to grin and bear the inconveniences life throws at you, and survive by discretely moaning to your other female friends (totally off topic, but the Guardian's recent report on endometriosis highlights this very well). And mostly that's what we do, particularly in this country, because we're all a bit English and we don't really like to kick up a fuss (unless it's a strongly worded letter. We're quite good at them). As for the child - well nobody really sees children as proper people, particularly when they're of an age where key vocabulary consists of 'cat' 'oops' and 'more', they don't pay any taxes nor have any substantial money of their own to spend. So their legs are less than half the length of an adult's, but make 'em walk, the lazy buggers with their lazy, pandering mothers...

Anyway, the idea for this post began while on holiday, where I had to check whether Boston subways were 'stroller' friendly. Mostly they were (because they were 'handicapped' accessible as it's known over there - more on that in a minute), but I discovered that there had been a plan in 2013 to get parents to fold their buggies on public transportation which had caused a massive outcry (and was subsequently dropped). The transport commissioner declared that the No. 1 complaint he received was about strollers on the bus and the 'T' (subway). I read a lot of comments from people on both sides. Parents rightly questioned how in the hell the Authority expected them to remove their baby from the buggy, collapse it while still hanging on to the baby (and any other kids vying to run in front of the bus / train) and then board the bus / train and stand without causing delays or accidents. On the other side were a whole host of comments along the lines of "Parents who bring strollers onto the subway during peak times are assholes" or "why can't they drive?" or "why don't these women just stay at home with the kids"? Where to begin...

I agree, that pushchairs on public transport are very annoying when they stop you getting on and off, and parents should be mindful of how they park them. Those that aren't are inconsiderate, just as anyone who doesn't think of other people on a crowded bus or train is (e.g. those who put bags on seats, try to get on before you've got off, eat smelly food, have loud phone conversations...). However, many comments went beyond annoyance at the few parents who inconvenience others with their thoughtlessness, to rant about how parents act 'entitled' in general by, apparently, their mere presence in public spaces.  Some certainly do, but such posters seemed oblivious to that the fact that their arguments about non-working women with non-working children not deserving to be on a train among hard working folks such as themselves, rather pinned the 'entitled' badge back on them. Special vitrol was reserved for the 'Yuppie Moms' (the US equivalent of Yummy Mummies I suspect), using 'hummer-sized' strollers, which seemed to be viewed as unnecessary, ostentatious fashion statements. The underlying message, that these women were vacuous airheads only interested in image and over-protecting their precious darlings, was rampant.  I agree, there are some daftly massive pushchairs out there. But bigger chairs do have practical benefits. Unlike my 'umbrella stroller' (which admittedly I do prefer on public transport), my big pushchair (which I categorically DID NOT buy for the brand name) maintains structural integrity when I bump it up a kerb or stupidly hang 5 bags off the back. It can be steered one handed. It can support a baby under nine months. And hold more than a tin of beans in the basket underneath.  And with a bit of adaptation will accommodate more than one child (should I ever be mad enough). And can be pushed over a surface rougher than tarmac. And usually keeps the sun / rain off effectively. And has a height-adjustable handle so both Drake and I can push it comfortably. And allows a snack tray to be fitted to keep Duckling's cake hole occupied in pursuits other than screaming...

Ultimately, the folding rule was rejected after parents voted in the majority against the change, and I'm glad, as travelling (off peak) in Boston would have been far more inconvenient for us and indeed our fellow passengers if we'd had to do the grapple and fold on every train we went on.  To be honest, in Boston access was actually pretty good, and generally, I think it is much better in many places now than it was in say, our parent's generation. So yes, I am being rather complacent I'm sure.  The raised bus stops, access lifts, dedicated spaces and ramps that make our lives easier now are not due to radical Mums with prams however, but wheelchair users.  Accessibility for disabled people is enshrined in legislation, and quite rightly too. Wheelchair users genuinely can't 'collapse' their chair to get on public transport. They can't bump their chairs up steps or balance precariously on escalators. The fact I have to do all of these things on a regular basis highlights how shitty access is for most wheelchair users, and in that respect I have no right to complain.

Buggy pushers are far, far more numerous though, which makes me wonder why we benefit from accessibility measures implemented for wheelchair users, rather than wheelchair users benefiting from the measures long ago put in place for us? Yes, it's because we have far more alternatives than wheelchair users - children are pretty portable really. But I also think it's because we don't make enough of a fuss. We know everyone hates us and our aisle blocker on wheels. We feel faintly apologetic and embarrassed about getting in everyone's way, knowing that before we had kids, we would roll our eyes too at the harassed Mum with the buggy so loaded with bags it wouldn't fit through the door. We want to get in and out as quickly as possible, and not cause any fuss, because, whatever advances there have been in drawing women out of the home, there is still a subtle underlying narrative of "seen and not heard" out there, both for women and children: contain them, control them, don't let them make a fuss (or make a fuss yourself). This comes from men, but it comes from women too, and, as some of the comments on the links above show, often in a far more vocal and critical way.  Women feel freer to criticise other women because it won't be seen as sexist, even though there's still a whiff of ingrained misogyny underlying it all. The worst are the sanctimonious fellow Mums and their "Well when I'm out and about, I balance little Sherbert on my head and strap Calendula to my back so they don't get in anyone's way.  I don't see why other Mum's can't do the same!"  In a recent court case that saw a bus company sued for failing to chuck a woman and baby (in a pushchair) off the bus in order to accommodate a man in a wheelchair, there was a lot of discussion of who should take priority morally and practically - a person in a wheelchair joining the bus or a woman with a baby already on it. Without knowing the exact circumstances it's difficult to definitively argue either way (though lots tried) but what really seemed to annoy people was that the Mum in question made a stand and didn't get off the bus when asked.  For whatever reason, right or wrong, she kicked up a fuss, and this instantly labelled her an obstreperous, 'entitled', oversized pushchair-owning monster.

I am no doubt reading too much into the great pushchair debate. Yet at the same time, I'm sure it's just one small example of a wider societal attitude problem towards mothers and their babies that makes us feel like we have to work to be accepted, rather than the rest of society working to accept us. I'm not about to apologise for owning a pushchair therefore because I need it to transport my baby, and if we're going to eat, and myself and my baby are going to be clothed, I need to get out of the house. Nor am I going to apologise for the probably slightly larger than strictly necessary size of my main pushchair, because aside from getting on buses, it's very practical, and frankly my long term comfort outweighs your brief inconvenience. What I will apologise for is running over your foot, haughty lady in Marks and Spencer, because, even though you did sort of walk directly in front of me without looking, I am a bit shit at steering.  And stopping.  And turning.  And hey, why don't they give you buggy proficiency lessons when you get pregnant?!  Woo, I smell a business opportunity!

*Just to add to this, I did a recent poll of my friends with kids, and all of them said that whenever they go out with their other halves and offspring in a pushchair, it's always the man that ends up pushing. Much like driving in fact.  Not sure if this is chivalry, a need to take charge or a lack of confidence in our perambulation abilities (probably all three for me), but rather telling whatever the case.