If you weren’t already aware, in ten day’s time, on 25th July 2018, Louise Brown, the first person to be born from IVF turns forty – so it’s IVF’s 40th birthday too. There’s going to be a big party at the Science Museum in London and the UK HFEA (Human Fertilisation and Embryology Authority), and other fertility organisations are in self congratulatory mood. This tweet says it all (thank you to my colleague Dr. Robin Hadley for this) and a sobering reminder of how often IVF fails – almost 80% of the time.
In response to this tweet, the HFEA had the decency to respond that “As we’re celebrating 40 years of IVF we wanted to concentrate on the positives but we do take your point about how we present these statistics”, but that feels pretty mealy-mouthed to me. Because ‘taking the point’ and actually DOING something about changing the way the media (and therefore the public) understand the shockingly poor success rates of IVF is quite another matter…
In the seven years that I’ve been writing this blog, I’ve learned a lot about IVF and other fertility treatments from those women who’ve undergone them.
It wasn’t part of my story because I was so ignorant about my own fertility I didn’t even understand that I needed to be thinking about it until it was too late.
IVF existed as a ‘backstop’ in my mind, a silver bullet that was guaranteed to work if I turned forty and hadn’t been successful conceiving naturally. I had no idea that for me, my fertility was already expiring at thirty-eight (when I missed my first period), maybe even sooner. I didn’t know that my eggs had an expiry date. I didn’t know that thirty-five was the age I “should” have been worried about. And I didn’t know that IVF for women 40+ has dismal success rates of between 2% and 9%. Even for those under thirty-five, the mythical ‘fertility falling off a cliff’ age, there’s only a 29% success rate.
So how was I so ignorant about my fertility and about IVF? A smart woman like me? It took me a long time to work it out, but in the end I realised that it’s not that I was ignorant – if that’d been the case I would have sought out the answers. No, it was worse than that – I had the wrong information.
What I knew for sure from school and the media was this:
- Getting pregnant was shockingly easy, so much so that we were advised not to even sit on a warm chair that a boy had recently vacated (not so true, especially after our twenties);
- That having a baby ruined your life (although no doubt had I become a teenage mother, it would have massively curtailed my life choices, as it did for my own mother. However, in my forties it seemed that NOT having a baby had ruined my life);
- That forty was the age to worry about declining fertility (although I had no idea what made fertility decline, nor that men’s fertility aged too);
- And that IVF always worked.
- Oh, and later, that motherhood was the most meaningful and fulfilling thing a woman could do with her life, so if I wasn’t a mother, I was doomed to be a second class citizen for life, with only dying alone and being eaten by cats to look forward to… (Also not true, but it took grieving my childlessness and a determined effort to free myself from pronatalist conditioning to liberate myself from these thoughts).
What would have made a HUGE FUCKING DIFFERENCE is if I could have heard from women like me, women like us. Women who were childless and had come to terms with that – hell – who’d learned to celebrate that! Women who’d been through physically, emotionally and financially gruelling fertility treatments and knew first hand what they entailed and how often they failed. Women (and men) who could have put the record straight.
So here is the first in a series of those conversations. We’ve called it ‘Childless Voices’ and it’s a conversation between 6 women (and one man) about what it means to grow up in ‘Generation IVF’. Because whether you’ve had fertility treatments or not, Louise Brown’s way of being born, and the commercialisation of this frontier science, has created an entirely new context for our choices and options around parenthood. We are #GenerationIVF.
On this filmed and recorded call, you’ll hear from some names that you may already know from the world of childlessness – authors, bloggers and campaigners who, like myself, have turned their own grief into support and advocacy for others who find themselves childless not by choice. We each speak individually, and then at the end of the call as a group, when we voice our “Asks” for the next 40 years. What would yours be?
Meet IVF’s ‘Childless Voices’. Each of them will be sharing a blog about this topic, so do check out their websites over the coming days.
From top left to right:
- Loribeth – blogger @ The Road Less Travelled & her blog: “Happy Birthday, Louise Brown”
- Jody Day (me!), author, blogger, campaigner, speaker @ Gateway Women
- Pamela Mahoney Tsigdinos – author, blogger, campaigner @ Silent Sorority and ReproTechTruths.
Here’s Pamela’s blog: “IVF is 40, Untold Stories Cast Milestone in New Light”
Middle row left to right:
- Civilla Morgan – podcaster @ Childless Not By Choice (you can listen to my recent interview with her here) and her blog Video conversations with trailblazers in the childless not by choice demographic
- Sarah Chamberlin, blogger @ Infertility Honesty & her blog: “Childless Voices Resound on IVF’s 40th Anniversary”
- Lesley Pyne, author, blogger @ Lesley Pyne & her blog: “IVF is 40, forgotten voices speaking out”
Bottom row:
- Andrew & Nicci Fletcher, editors/publishers The Childless Not By Choice Magazine and We Are Worthy Summit and Nicci’s blog I was wrong to think about IVF with a 10 year old’s brain
Click the image above or this link to watch this vital, supportive, encouraging and informative discussion. You can also download an audio version of it here, if you prefer (please note that the first ‘sound’ on the video is 27 seconds in, so on the audio, you don’t hear anything until then). And please share this film – here’s the link: https://vimeo.com/279192072 – with your friends and family, and especially with younger women. One of things that so many of us on this call say is how important it is that the next generation of young women (and men) are better informed about their fertility, and also about the option to leave a meaningful and fulfilling life without parenthood – whether that’s by choice or not.
In addition – Berenice Smith, the Founder of Walk in Our Shoes and a big part of World Childless Week was meant to be on the call and a power-cut prevented her from joining us. She and her husband live 5 miles away from Bourn Hall, where Louise Brown became the first ‘Test Tube Baby’ and that’s where they attempted IVF themselves. Click here or below to watch or click here to read her blog which accompanies this video:
“Childless Voices” will be recorded each month now, featuring conversations with authors, bloggers, speakers, activists and campaigners from around the world who have dedicated themselves to making a difference in the lives of other childless people. I guess there goes another nail in the pronatalist coffin that says that we’re a selfish bunch of saddoes with too much time on our hands and nothing to offer to the world then!
Such an honour to be part of the Childless Voices with you & the others, Jody! 🙂 As I said to Pamela, IVF has come a long way in 40 years, but it’s obvious we still have a long way to go to ensure better outcomes for everyone who undergoes ARTs — whether or not they get to take home a living, healthy baby. Hopefully there will be more progress on this front over the next 40 years & beyond!
I am so thankful to see this being addressed. My husband and I didn’t do IVF, but it seems to be assumed when you say that you did want children but you couldn’t, that you will of course have done IVF. As if saying you couldn’t have children without having tried IVF was akin to saying, “Sorry Sir, but the dog ate my homework”. Well-meaning friends did say, “Go on, why don’t you give it a go?”, overlooking the fact that we were over 40 (I met my husband at 37) so not eligible for any funding (fair enough, NHS is horribly stretched), and the odds of success were so very low that the chances were we would have sacrificed what we did have for nothing. My cousin had 6 rounds of IVF at great expense, both financial and emotional, before she conceived naturally following dietary changes suggested by a nutritionist in preparation for IVF attempt number 7. But IVF is still seen a panacea and a route that all infertile couples should go. Whilst there are a lucky few who do have families thanks to IVF (maybe some of these babies would have come anyway or with other less expensive and less invasive interventions as was the case for my cousin), the majority (80% according to the article) were given very costly false hope.
I don’t regret not doing IVF. I don’t believe it would have worked. I was 40 with unexplained infertility, or maybe I was just 40 and in truth the ship had sailed. But I do feel the social pressure that I “should have”. Along with the adoption chestnut…another thread for another day.
My small foray into infertility treatment did leave me feeling that you are just being processed on a conveyor belt and that there is little empathy or consideration for the fact that this is actually painful.
Alison, thank you for your honest post and I am really sorry to hear how much you have suffered. You make a very good point that given the emotional roller coaster that is IVF, that some sort of follow up care should be provided for those (and they are the majority of their patients) who don’t have a happy outcome. It is not on, in my opinion, that people should be encouraged to undertake such gruelling and expensive treatment, with such low odds, and then be cut adrift when it doesn’t work with no ongoing support.
I am glad that we are starting to address this, because maybe if there can be more honesty, there might be fewer people losing everything in pursuit of a family.
It’s funny thinking of myself as ‘the IVF generation’; I’m 45.
I think my experience was possibly a bit different from the mainstream, in that I had one sincere, and rather dogmatic, religious parent, and received a Roman Catholic education, and therefore, the conditioning I had was that IVF was wrong. I lapsed from the faith I’d been brought up in, but still found that I had retained some its training, and never really felt like IVF was something I wanted to pursue; what that meant in my head was something like ‘leaving it to nature’, which, had I had more education about fertility, I would certainly not have done for such a long time.
Other things you describe here, and which I certainly did inherit from my upbringing, very much resonate. The idea that getting pregnant would be a disaster, and should be avoided at all costs until I was married and settled. The notion that pregnancy could happen all too easily. That it was important to ‘develop myself to my full potential’ before getting married and having children, and, paradoxically, that getting married and having children was the most fulfilling thing a woman could do.
Now I feel I’m beyond the desperation of the final Trying To Have A Baby years, and through the worst of the grieving, I still find myself pondering a great deal about the life I’ve led and the choices I made as a woman in a unique time in history, with options open to me which women had never had before. My reflections are mixed.
In some ways, I feel I was spared a great deal of grief by choosing not to engage with IVF, and I find I don’t regret that decision. It was hard if people to whom I disclosed my longing for a child suggested I ‘hadn’t tried hard enough’ if I’d not gone down the IVF route. Overall, however, having watched friends suffer physically and emotionally through the process, I’m grateful to have been spared that.
My biggest regret I think, is that I gave so much credence to the zeitgeist that I should establish a career prior to settling down. I was never strongly career-oriented, and, although I did reach a professional status, I didn’t find fulfilment there, and have often wished I had been able to find a husband and start a family during my twenties (something which men of my level of education really didn’t seem to want to do), and then ‘worked it out together’ and found ways to make work and family life elide as we grew older. It took me long time to break out from the class conditioning I’d received and mix more widely and generously with others. I sense that people a generation younger than me are starting to take this approach, and I applaud them for it.
The saddest thing is that, no so long ago, I had a frank conversation, with my Roman Catholic mother in which I spoke with her more honestly than I ever have about my early sexual life and how I felt I couldn’t have been honest about it. I asked her what she would have felt and done if I had come home pregnant at the age of, say, 19, and she said it would have been a shock but she would have helped me and we “would have tried to make the best of it”. I had always assumed that pregnancy would mean being outcast from my family.
If I have one wish for people of a younger generation, it’s that they may find the support in society, and the role models to help them realise both their personal, as well as their professional, dreams. Everyone is different, and for some people I think creating a family is the best work they can do, for others it is something else. When that opportunity is missed because of others’ ideas about the right way to live (whether from those around you, or the government), it is a loss.
I don’t think clinics have the stomach for addressing the issue of failed IVFs. They didn’t even prepare you statistically for the case of success and failure. 19 years ago with my first failed IVF I was totally shocked by the fact that despite the number of eggs collected there was only one that fertilised and not a single viable for freezing. I wrote a flow chart and gave it in to ask them to fill in all the details of different processes and next stages we would go through during the process and the varying outcomes.
Thankfully they did and displayed it in the department and I hope gave it out to all new patients.
I think that unsuccessful IVFs should be followed up not just physically but from a mental well being point of view over several years. Even if it was just a letter every couple of years asking how you are managing and if there are any services you are in need of.
I never understood the impact that failed IVF and ectopic pregnancy could have on my life. So 19 years after a miscarriage from IVF and 11 years on from an ectopic pregnancy I am on the road of mopping up the mental and emotional impact childlessness has had on my life. Including loosing a professional job because of mental health and the impact that that can have on physical health.
I would never have believed I could have been affected this way as I have always been able to get back up and dust my self off and carry on. But 11 years ago that stopped in a mighty big crash and the bounce had finally gone. The reserves were depleted. It has been so hard to accept this about myself. That I lost my fight, bounce back, perseverance, carry on regardless, whatever you might want to call it.
Fortunately I know there is a good life without children. And I believe one day that I will meet my lost children. I am fortunate to have a faith and that’s what holds me together. I know that isn’t for everyone, but I also get help by addressing the issues on my mental health I have now. So working through gaining life again after years of trying to survive and cling onto a job I enjoyed and was good at.
In a strange way I’ve been on a journey that’s been very difficult the past couple of years, but I’ve done different jobs, been unemployed and explored my own business. To being in a new job that is different but in a place where I know now I have the skills to apply for work again as and when I want and need to.
Childlessness is a journey and I know at the end of the day I’d still have loved to have been a mother and be ‘normal’ in many aspects of the word, if there is such a thing. But I wouldn’t be me without it and I’m not sure I’d recognise the person I might have been. This journey has been painful but I think I’ve grown in ways I would never have grown without it. I hope and believe that this journeying will help me to reach out to others in empathy of understanding pain.