It’s Sunday and We’re (A)Live!

There’s been a lot of press coverage this week about the recent cuts to IVF on the NHS – several Clinical Commissioning Groups are now considering restricting treatment to women aged 30 to 35. Someone said to me that infertility only gets this sort of attention from the media when things are slow in the news. It’s true the silly season is upon us but it doesn’t seem like the news has been either slow or silly this week – after all two men seem to be threatening to blow us up. I know this kind of begs the question why you would want to bring a child into the world but, whilst we’re all still here, I agreed to appear on the BBC’s Sunday Morning Live to talk about IVF (not North Korea).

At best when people argue against IVF on the NHS, they just don’t understand the devastation it causes. At worst, there’s a covert implication that somehow it’s your own fault and you should just get over and on with it. It worries me when people on the other side of the argument – as there were on the show today – haven’t experienced the struggle to conceive themselves, yet seem so confident about dismissing treatment for what has been classified by the World Health Organisation as a disease.

For me, the bottom line is this: do we want a National Health Service that thinks it’s ok to propogate inequality? Is it right that the majority of public health care providers in this country are going against the guidelines of the Government agency which was established to promote clinical excellence and says that all women under the age of 40 struggling to conceive should be given three rounds of IVF? It won’t be long before your right to try for a baby, will be based on your ability to pay. Are we really saying that’s OK?

The producer of the show told me that they wanted to hear a little about my story  – eleven rounds of unsuccessful fertility treatment usually piques people’s interest – and the fact that I am still pro IVF can come as a surprise. But I know that this reproductive technology does work. Not everytime for everyone – I am proof of that – but in the forty years since it was invented it has given millions of people the family they dream of. As long as those two men haven’t done what they’re threatening and we still have a world, why would we want to deny anyone a chance at that?

http://www.jessicahepburn.com

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Kicking Heels and Ass

Life is beyond busy at the moment so forgive me this late night mini blog. But if you’re kicking your heels here are two things I’d love you to look at because I think they kick-ass.

First, the HFEA’s new website  – I was honoured to be asked to be an advisor on the process of developing the new site for the UK’s regulator of fertility treatment – the Human Fertilisation and Embryology Authority (better known as the HFEA). I think it has the potential to be an invaluable resource for patients. From its guide to choosing a fertility clinic with its TripAdvisor style ratings; to its traffic light system (red, amber, green) for new developments in reproductive science (such as those controversial ‘add ons’ that were explored in the BBC Panorama programme I was in last year). Have a look and see what you think, and if you like it please spread the word!

Second – from the other side of the pond – there’s a new website called Reprotech Truths. Specifically designed to promote greater transparency within the fertility industry in order to better inform and protect patients, it’s the brainchild of two women I greatly admire: Pamela Tsigdinos, author of the book Silent Sorority and Miriam Zoll author of Cracked Open. I was equally honoured to be asked to be on their advisory board because to my mind openness is everything in the science of making babies. Have a look and see what you think of this too and if you like it, you know what to do!

So that’s it from me for now…but if you do happen to be kicking your heels late on a Sunday evening, at least it will give you something to do other than read my regular ramblings. And if anyone is kicking their heels, please could you tell me how you do that because I’m a woman whose ‘To Do List’ is starting to read like a novel and it’s kicking my ass!

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The IVF Generation

There has been so much great fertility press over the last couple of weeks that today I want to write about what other people have written.

The stream of announcements and articles is partly because of the ESHRE conference that took place in Geneva at the beginning of July. ESHRE – which stands for the European Society of Human Reproduction and Embryology – was unknown to me until relatively recently but I now know that it is one of the biggest gatherings in reproductive science in the world. Breaking news at the conference this year included new evidence about the male biological clock, and the real reasons for the exponential growth in egg freezing.

Next year – very excitingly – we’ve been invited to take a mini version of Fertility Fest – my arts festival about the science of making babies – to the ESHRE Conference in Barcelona. Yes, I’m dreaming about the tapas, but I’m also thinking about how the arts can best contribute to the agenda.

It will be the 40th anniversary of the first ‘test tube baby’ Louise Brown next year and one of the things that’s been uppermost in my mind is how it felt then and how it feels now to be a child of science. I don’t think we’re talking about it enough. When Louise was born there was no question that she didn’t know she was made in a laboratory – it was worldwide news. But IVF is now so ubiquitous, a lot of people don’t even inform their children that they spent the first few days of their life in a petri dish. If you’re one of the IVF generation does it matter to you that you were conceived by your dad pouring over porn in a Producing Room? Do you care that your mum spent weeks (maybe years) pumping herself with drugs never really looking at the label and thinking about what they might do to you in the future? Or is that we just don’t want you to know? I am certainly not judging anyone for doing these things in their pursuit of parenthood – I did them too – but it doesn’t mean that I don’t think we need to talk about it more.

And so to another article that was in the Guardian yesterday – about a fertility doctor who it’s thought may secretly have fathered 200 children. The story centres around a Dutch woman who made the decision to undergo IVF on her own with donor sperm. She was assured by her doctor that the donor would be traceable by her children (a daughter and then a son). However, what he didn’t say to her was that he’d developed a habit of donating his own sperm.

It’s still not clear whether this doctor was her donor. He died a few months ago, aged 89, and resisted paternity tests. But there is now a legal challenge to try and find out the truth. Many people argue that a child’s right to information about where they came from should take precedence over a donor’s right to stay unknown and, besides, it’s becoming easier to trace your donor whether they want you to or not. It’s another question for the IVF generation that I think they have a right to demand us to discuss.

I founded Fertility Fest to explore all these questions and more about the science of making babies. I know that artists can do it brilliantly and uncompromisingly. That’s why having a platform like ESHRE next year is so exciting. Maybe we will start making the news!

http://www.jessicahepburn.com

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Nothing To Say

In November, I’ll have been writing this blog for four years. For the first year I posted every Sunday. I then moved to bisundayly – I know this is not a word but I hope, like me, you think it’s ok to play with language. I’ve rarely missed a Sunday post. Once I wrote on a Thursday when things were very busy at work; a couple of times I’ve been up a mountain and had to skip a week. Occasionally, I’ve written an extra post outside my regular schedule. But mainly I’ve written my blogs, biweekly on a Sunday.

I try to ensure they’re all connected in some way to the pursuit of motherhood which is what my blog is called. Sometimes I write it during the week when something happens in the world that urges me to put fingers to keys (I’d rather write pen to paper here but playing with language is different from playing with truth and the truth is I rarely pick up a pen these days, my laptop has become my paper). Most times I wait until Sunday arrives and then decide what to write. Sometimes my blogs are long (too long?). Most of the time they’re short. Sometimes I wonder why I bother writing. Most of the time I know why I do. But today, I’m afraid, I have nothing to say.

So I hope you’ll forgive me for a little digression. Recently, I’ve been thinking a lot about poets (stay with me and one day you might find out why). I listened to an interview with Philip Larkin in which he said that he wants his poems to be understood at first reading, line by line, but he doesn’t want their meaning to be exhausted at that, there should be enough to make you want to read them again. The Welsh poet Dannie Abse once said something similar and, to me, utterly beautiful – he said he wanted his poetry to be as translucent as water but, when you get in, you can’t quite touch the bottom.

Today as I write my bisundayly blog – on the tube to Cockfosters, thankfully there are no delays on the Piccadilly line – I have nothing to say but I hope my words have made sense to you word by word, line by line. And perhaps beneath the surface of the water there’s something more – although you may not be able to reach the bottom.

http://www.jessicahepburn.com

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Summer’s Here

What a beautiful day! I wish I could tell you I’d been out enjoying the sun, but I’ve been at my desk writing a funding application for Fertility Fest next year. I don’t mind writing applications, and I definitely like funding, but I can think of better ways to spend a summer’s day!

So! To keep things short – so I can go and have a cool drink and watch the midsummer’s sun go down – I’m going to give you a quick round up of my top summer fertility events and reads.

Summer in the city? Check out Re:Production at London’s Etc Theatre in August – a great new play about a woman who helps other people to makes babies but can’t decide whether she wants to make one of her own.

Heading to the biggest and best arts festival in the world? Check out Joanne Ryan’s Eggistentialism at the Edinburgh Festival – an hilarious existential crisis of a woman and her thirty-something eggs.

And finally two great beach reads for anyone who has struggled to conceive and is carving a future they never imagined: Dear You by Tessa Broad and The Facts of Life by Paula Knight.

All these artists will hopefully be appearing at Fertility Fest next year – as long as that funding application is successful. But I did give up a beautiful midsummer’s day for my desk and my laptop. Surely Titania – Queen of the Fairies – will reward me for that!

Where Is The Love?

The weather’s been nice but things have been pretty bleak in the UK these last few weeks. It’s hard to know what to write in a blog about the pursuit of motherhood when the world doesn’t feel a safe or pleasant place to bring up children right now. I think one of the hardest things to come to terms with is how it’s possible for man do this to his fellow man. I know it’s not new, throughout human history we have shown a capacity for brutality to each other but where is the love?

This week I had wanted to tell you about some great summer fertility arts events and reads that I’d like to recommend. It’s true, of course, that life goes on. But I’ll save it for another time because today has to be about remembering the victims of the Manchester and London terror attacks. So can I ask you to listen to the Black Eyed Peas instead?

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Girls Who Speak Truth To Power

This week I watched Three Girls – the BBC drama on the Rochdale abuse case. It’s harrowing but important viewing. It tells the tragedy of three girls – just three of many thousands in this country apparently – and how a terrible combination of poverty, family breakdown and lack of aspiration led to human exploitation and racial divide. It also shows, shockingly, how the authorities – the people whom we have entrusted with power – for years did not have the courage or the empathy do anything about it.

I’ve always been passionate about social justice and I’ve never been afraid to speak up for what I think is wrong. A couple of months ago my colleague and friend the amazing Anya Sizer, who works for the national charity Fertility Network UK, sent me a photo. We happened to be at the same school together although we were a few years apart and never knew each other at the time. But she’d found a newspaper cutting amongst her things of me leading a school demonstration about the redeployment of our teachers as a result of Government cuts. I’ve pasted the grainy photo she sent me below – apologies for quality – I’m the one on the second left, mouth open with the megaphone.

These days my mouth and megaphone are primarily directed at the subject of fertility, infertility and assisted conception. Out of my own personal tragedy it has become my vocation. But I know I’m not alone because nearly everyday I get messages from people telling me of their own pain and questioning why infertility is still such a taboo. I blame the authorities for this situation too. They’ve not done enough to acknowledge that this is a silent but growing epidemic that needs to be understood and addressed. They’re steadily cutting IVF on the NHS forcing desperate people to pay for treatment that they can’t afford and to go abroad where regulations aren’t as rigorous as they are here. (Which ironically can lead to problems that then have to be paid for by the NHS). They’ve failed to put in place proper measures to help people with the devastating impact the struggle to conceive has on your mental health, whatever the outcome. And on top of all this they’re not ensuring that the next generation have all the information they need about their fertility so they are in a better position to make informed decisions about how they want to live their lives.

Watching programmes like Three Girls fuels my passion to do something to make this world a better place. That’s why I’m committed to bringing about change in the one area I know best. Next year my festival – Fertility Fest – will be back aiming to tackle that long list of things. We’ve just been offered a grant from the Wellcome Trust to run two more festivals and in 2018 will be taking it to London, Birmingham and Barcelona! And then in 2020 I’m planning my third (and final) huge fundraising challenge to raise awareness of what it feels to be an adult or a child without the family you long for. So I’m afraid this means you’ve got three more years of me and my megaphone.

But to finish my blog today, I just want to honour two women: Sara Rowbotham and Margaret Oliver who did all that they could – despite being ignored by the authorities – to ensure that those three girls in Rochdale got the justice they deserved. I’d have gone on any school demonstration for them because this world needs girls who have the courage to speak truth to power.

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Under the Microscope

Another week, another fertility industry scandal. Or so it seems. Of course this is not quite true, it isn’t every week but they do seem to be coming thick and fast these days. At the end of last year there was the ‘add ons’ saga – if you didn’t see the Panorama programme in which I played a small part, it’s still on catch up. And now the Daily Mail has accused certain fertility clinics of offering women cash for their eggs. It’s a complex issue and I wrote an Opinion piece on the story for the Guardian this week which has attracted lots of interesting comments.

It does feel like something’s happening though. As more and more people are leaving parenthood later – for a multitude of reasons – we’re seeing more and more people turning to IVF to facilitate their families. And with IVF decreasingly available on the NHS, there’s an increasing number of people going privately. As the industry grows, and gets more competitive and tries to find ways of bettering the success rates of a science that often doesn’t work, it’s becoming clear that discussion is urgently needed about how to protect the patients going through it. I don’t have the answers, but I will continue to ask the questions because that’s the only way things are going to change.

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London Marathon. Tick.

Marathon Finisher

London Marathon. Tick.

We won’t say too much about my time – except to let the Kenyans know they have nothing to fear! OK, 5 hours 27 minutes for those of you who care about these things. Longer than I had hoped but I made it through to the finishing line and it was the most amazing day.

The second half in particular was tough but I ran every step of the way with all your messages of good luck in my heart. I have been overwhelmed by how much love and generosity I’ve received and have now raised over £5,200 including gift aid for Fertility Network UK which brings my total fundraising from this and the English Channel to just shy of £30,000. Thank you all so much for your support.

And can I just tell you this.

When I went to the London Marathon Expo on Friday to pick up my race number, I asked one of the stewards to take a photo of me. She asked me what charity I was running for. I told her. She then confided in me her best friend was going through fertility problems and how awful it was. Then, on Sunday, when I was at the starting line, I was chatting to the woman next to me. She asked me what charity I was running for. I told her. She then confided in me that she and her husband had been through fertility problems before having their two children and how awful it had been. And on route, two different runners came over and thanked me for what I was running for. They didn’t say why but maybe it had been awful for them too. This is what I will remember most about my London Marathon: how when you’re prepared to speak out and to run for what you know is important in the world, however much of a taboo subject it is, people will have the courage to say ‘me too’ and that’s how change will happen.

If the London Marathon is on your bucket list: do it. If I can, you can. Do it for whatever you think is important in the world and make change happen. The atmosphere is incredible and you’ll remember the day for the rest of your life.

All my love and thanks,

Jessica

http://www.jessicahepburn.com

Yes, it IS Tuesday

Now, I know I usually post on a Sunday and only once every two weeks, but today is a special day. I’m taking part in a ‘blog tour’ (fancy!) with 25 other wonderful women. We’ve come together to launch Justine Brooks Froelker’s latest book The Mother of Second Chances, the publication of which coincides with National Infertility Awareness Week in America.

I’m delighted to be coming after Sarah – of the blog Camino Sarah – especially as I would love to follow in her footsteps one day to the Cathedral of Santiago de Compostela. Do have a look at her post yesterday as she writes beautifully about the pilgrims of infertility. It brought a lump to my throat when I read it.

And tomorrow, I will be followed by Kim from the blog Salt in the Womb. Her last post was hilarious – about a wild racoon and its poop on her stoop. She called it Rork and writes: ‘Yes I named the racoon. Shut up.’ Now that’s priceless and I can’t wait to see what she writes tomorrow.

But don’t stop there, why not read every woman’s post – just take a look at Justine’s blog Ever Upward for the full list. And if you’re better at social media and hashtags than me (which most people are) then do share them and help break the silence and stigma using the words: #Infertilty #NIAW #EverUpward. And if you want to, please share your story too.

I stand shoulder to shoulder with these women because we all know the pain of our fertility letting us down. But how could I be in better company? And WHEN (not IF) I reach the finishing line of the London Marathon 2017 on Sunday which I am running for Fertility Network UK, I will be high fiving them and all the people in the world who have refused to be beaten by infertility and have taken their baton and run!

http://www.jessicahepburn.com

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