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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.

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