Tag Archives: Tommy’s

Preventing Prematurity and Banishing Blame

Sunday was World Prematurity Day. It was the second since Boo was born, but the first since I have been blogging and the first one that I felt I could get involved in in my own small way. I wrote a blog post in which I tried to sum up what prematurity has meant for my family and (around Sissyboo’s 6th birthday party) tweeted, chatted online and read blog posts by others for around 16 hours. It was emotional and exhilarating, two words I didn’t really know the meaning of until having a premature baby of my own. The premature baby community – a global one – fought back against the challenges our children and families have had to face with eloquence, compassion and fierce tenacity. We learn those things from our children.

The focus of my tweets and posts last week was all about what comes after pre-term birth rather than before. Because, frankly, in my experience, once you’ve had a baby born too soon pregnancy fades into obscurity. Except that is, in those vivid moments at 3.06 in the morning when they flood back. When you torment yourself by thinking did I do this? Did I do something wrong? Is it my fault my son was born at 29 weeks? Is it my fault he has cerebral palsy? Will he grow up hating me if he can never walk? I’ll come back to those moments shortly, just as my brain does, with cruel predictability on a weekly basis.

Given how resolutely I try to focus on life after prematurity on the blog, I was especially grateful to be invited for a World Prematurity Day event hosted by Tommy’s and Bounty at the House of Commons yesterday which was devoted to pregnancy health. To be honest, I wasn’t sure what to expect. This is the first time that I have been invited to anything on the back of my blog. I was flattered, interested and nervous in pretty much equal measure. And then I was delighted to learn that two of the wonderful women who work for First Touch, a neonatal unit support group at St George’s in London would be there and that Jennie from Edspire, whom I’d never met, but who has been one of several bloggers who have led me by the metaphorical hand through the last 19 months would be speaking. I have a lot to learn about prematurity still and was eager to find out more to enable me to do as much as I can to help others.

The focus of the event was on prematurity prevention. In particular, Tommy’s was promoting their Five Point Pregnancy Plan, which was launched two years ago and which is disseminated via Bounty to their staggering 2.5 million members. You can read more about the plan and Tommy’s work in identifying and helping vulnerable women here. But the main areas of focus are as follows: smoking cessation, eating a nutritionally adequate diet, exercising, tackling obesity and addressing mental health issues.

This is not, as you’ll notice, a prematurity-specific plan. It’s about promoting healthy pregnancy for all women, whatever the outcome. It may sound like old-fashioned common sense, but this is vital information that needs to get out there. As Jane Brewin from Tommy’s noted in her speech, it is shocking to think that there are women in this country today who are struggling or otherwise unable to achieve a nutritionally balanced diet for themselves and their unborn children, but it’s no less true for that.

The importance of giving women the right information so that they can make appropriate ‘lifestyle choices’ – the buzzword of the night – was made passionately and everyone in the room was, I’m sure, in agreement that empowering as many women  as possible in pregnancy to make healthy choices for themselves and their children is an incredibly important initiative of which Bounty and Tommy’s are justly proud.

So why did I feel so uncomfortable? Why did I have tears rising to my eyes? (I’m not a crier, by the way. It takes a lot to make me cry.) I have to answer that question in two parts, I think. The two parts of Mrboosmum need to speak.

First, there’s professional me. For reasons you don’t need to worry about, I have spent quite a lot of time reading pregnancy and midwifery manuals from the seventeenth century onwards. (I know, I’m an odd individual. Truly.) Obviously, what was known about pregnancy and labour, let alone prematurity (a term that wasn’t even around at the time), was very different then when compared to what we know now. But there is a striking continuity of advice offered to pregnant women over the past 300 years. In the eighteenth century there’s a lot of advice about not playing cards too much (exciting the brain was supposed to lead to still birth or ‘birth defects’) and eating lots of chocolate and sitting on the sofa is very much frowned upon. The advice is: exercise, but not too much; eat, but not too much etc. Sound familiar? (I could go on, but you get my drift…)

There is a good reason why things have changed so little. This is sound, sensible and now medically-verified advice that women should be heeding. But tone is important, I think. The phrase ‘lifestyle choices’ makes me bristle. In the eighteenth century the term was ‘female employments’, but it means the same thing. Women are unreflectively doing the wrong things and making the wrong choices about how to pass their time through pregnancy.

The rhetoric of choice is a difficult one for me. I have never smoked. I know many women who have who have chosen not to smoke in pregnancy. I have known people take up gym memberships or opt to go on diets before trying to conceive. But is this really all about choice? For some women, eating healthily is more an act of will than a matter of preference, as Jane Brewin implicitly suggested yesterday. Diet is, of course, affected by various socioeconomic factors. They need to be targeted as much as women do. And mental health? Well, where’s the choice there except that stigmas need to be removed if women are to feel able to accept help it if and where it can be accessed. If I could have written ‘if’ in capital letters and not look like I was shouting, I would have.

Let me be clear: making informed choices available to all pregnant women is important. And I am glad that Bounty and Tommy’s are doing this work. But choice also implies responsibility and with responsibility comes blame. So let the other me speak. The Mom me, rather than the professional me (although, to be honest, we are the same person.)

Mom me will never forgive myself for Boo’s premature birth. I have tried. I wrote a blog post about it and re-read it regularly. I spent 6 weeks doing cognitive behavioural therapy. But I will never forgive myself. I know that.

Did I make the wrong choices?

No. I was not over 40 when Boo was born (one lifestyle ‘choice’ and proven risk factor mentioned in the  presentation but not part of the Plan). I took folic acid and pregnancy vitamins for months before I tried to conceive. I have never smoked and didn’t drink. I am a vegetarian of 25 years and eat healthily and well. My BMI was normal. I exercised gently but regularly, so much so that weeks after giving birth to Boo and breastfeeding I started training for a half marathon to fundraise for premature babies. I have my own mental health issues, but didn’t in pregnancy. I have prematurity to thank for them.

On paper, at least, I look like a paragon of pregnancy virtue. A ‘good girl’, in eighteenth-century terms who in twenty-first-century parlance made all the right choices.

But my son was born at 29 weeks in a spontaneous labour. I had had one healthy term baby before that. This shouldn’t have happened to me. To him. But it did.

And I am not alone. I am one of the around 40 per cent of women who gives birth prematurely with no known cause. And I am grateful that Tommy’s funds research into prematurity because I hope that in the future they may be able to lower that shocking statistic (although us forty per cent weren’t mentioned yesterday at all).

Important though the 5 Point Plan is, I was already following its advice and it didn’t help us. Neither did it help Jennie, nor my colleagues from First Touch. All of us read the books. It made no difference in our cases.

And so the tears rose up in the presentations. Because this rhetoric of ‘choice’ can feel to mothers like me who made the right ones like a rhetoric of blame. I know rationally that I have no reason to feel guilty. The last time I shed real tears, lots of them, was just a few weeks ago when Boo’s cerebral palsy diagnosis was confirmed. I wasn’t crying because he has CP. I’d known that for many months before the piece of paper arrived. I didn’t cry when I saw the words ‘severe brain damage’ because I saw that damage for myself on CT scans in May of last year. The images are etched into my retina.

No: I cried because the MRI scan confirmed that it wasn’t my fault. Boo’s brain injury was not sustained in pregnancy. Nor on the day he was born. I didn’t do it to him. He got an infection. In the neonatal unit. It caused the massive brain bleed. Not me.

But I will feel guilt until the day I die, even though I know this is not my fault. Jennie, at several points in her wonderful speech about Esther and William yesterday, talked about her ‘failure’ to take her children to term. I nodded through the tears (this time tears of solidarity), because I share that sense of failure. I feel it daily even though my head knows I shouldn’t.

Information is vital. I work in education and am passionate about it. I believe in women having choices in all aspects of their lives and access to all of the resources they need to make the best decisions for themselves and their families. And I am grateful to the work of Bounty and Tommy’s.

But what I feel most passionate about today is doing more. More to raise awareness about prematurity and its many known and unknown causes. More to support other women who are about to or have already experienced premature birth. More to help them live with prematurity and whatever that brings, whether its beautiful, healthy children like Esther and William, or gorgeous babies like my Boo, who will never outgrow prematurity and will live with cerebral palsy and epilepsy for the rest of his life.

I will not stop, because prematurity is not just a pregnancy issue, or something that ends with your stay in the NICU. It stays with you and your children forever.

Why Prematurity is like The Matrix: A post for World Prematurity Day

Do you want to know what it is? Prematurity, I mean.

This blog is, in large part, my attempt to tell you just that. And this week, the week that will conclude with World Prematurity Day on November 17th, I want to do that more than ever. I want to tell you what prematurity is.

I don’t mean technically. You probably know that prematurity is clinically defined as birth before 37 weeks gestation. You may also know that 15 million children are born too soon every year, 60,000 of which are born in the UK alone. But parents of premature babies (though, in my experience, they frequently cling to statistics) know that facts and figures don’t mean all that much when it’s your child who has been delivered in a pre-term birth. If you are quoted an 80-90 per cent survival rate for your child (as we were) and, unimaginably, they are one of the 10-20 per cent who die, or if you are given a 70-80 per cent chance that your child would outgrow their prematurity (as we were) and they don’t (as Boo can’t), well let’s just say that statistics don’t mean a thing.

They are not prematurity.

Prematurity is despair that runs so deep that you feel you can plunge no further. Prematurity is hope that makes you fly so high that you can barely breathe with the excitement it generates. Prematurity is pain and joy. It is death and it is life. It brings into focus what it’s all about. What really matters. And once you have experienced this, nothing will ever be the same again.

You see, prematutiry is like The Matrix. I never thought I would be the one this happened to. And there are moments – who am I kidding, I mean days – when I wish Morpheus would enter my life with his funky shades and offer me a blue pill so that I could forget about it all. So that I could go back to my happy, pre-NICU existence, where I just got on with the job of looking after my kids and going to work and socialising.

This life tastes bad sometimes. There have been days that have felt stiflingly grey, when I have longed to breathe fresh air and taste the pleasures of my former life. Days when I have been scared out of my wits by things I hadn’t ever known about before: about long lines and lumbar punctures; about brain bleeds and cerebral palsy. I rather liked the normal world that was pulled over my eyes for the first 35 years of my existence. But of course, I had no idea how bloody lucky I was at the time.

I can’t go back. This is my new reality, a reality that is structured as much by prematurity as it is by the passing of the seasons and the days of the week. It is everywhere in my family’s life, even though we left the NICU well over a year ago.

But this is only part of our story. This is only part of what prematurity is. Because prematurity is also jaw-droppingly revelatory. It opens your eyes to a world that was always there, but (in my case) you never really knew existed. And it’s a challenging world, to be sure. It’s a difficult world. Yet it is also an astonishingly beautiful place in which the truth about life, about why it is so very precious, is revealed. How could you ever appreciate a finely cooked steak if you haven’t tried to digest the indigestible? Ignorance is not bliss. It’s only when everything you hold dear is on the line that can you appreciate it. I mean really appreciate it.

There is no blue pill for me. But if I were offered it, I wouldn’t take it even if I would give my soul for my son not to have cerebral palsy.

You see, prematurity is the scales falling from your eyes. It’s seeing what makes the world turn on its axis. And once you’ve had a glimpse of this reality and seen it for what it is, you see everything differently and you bat away all the trivial stuff that preoccupied you before the NICU like a fly to the swat.

Because none of that is real in the same way. I can see that now.

Prematurity affects the lives of millions of families across the world every year. On World Prematurity Day, please consider giving a donation, or volunteering some of your time, to one of the leading charities (such as Bliss, Tommy’s or Bounty) that fund research into pre-term birth or who offer invaluable support and care for families affected by this life-changing event.

Thank you.