Thank you to all who participated and read along in the Avalanche: A Love Story
You can find a summary of the blog book tour here: Fertility Medicine Failures Illuminated. The full set of contributions are also included in this blog post: We’re Not Going to Sugar Coat Failed IVF: The Grief is Real.
Wrapping up this book exploration, we have author Julia Leigh to answer a few questions. Feel free to comment further below.
Q. Julia: What are some of the questions/issues you hoped to hear from interviewers and media outlets that haven’t yet been raised? How would you have addressed those questions/issues?
JL: In very general terms I’d say there’s not enough focus on the kind of world that a fertility patient finds herself in. I did try to lay out the context in my book – how the clinic operated, its subtle and not so subtle ways – and more attention to this side of things would be welcome.
Q. Coming to terms with the inability to conceive children and/or IVF trauma has typically been an isolating, solo experience, mainly due to the lack of any socio-cultural etiquette or convention to help process and heal. What struck you as you read along on the blog book tour this past week? How did it feel to hear from women — across the world — who have shared this experience openly acknowledge and validate your grief and the challenges of pushing forward?
JL: I’ve read all the blogs and comments and I’ve been so deeply heartened by the thoughtful generous responses to the book.
My great thanks to everyone who participated in this blog book tour, and special thanks to Pamela for bringing us all together. I’ve found it so helpful, I feel like I’ve been able to take my bearings, facing True North.
Q. One common reason many infertility survivors share their story is as a way to heal. But usually there’s other motivations, such as busting myths or showing alternative roads to resolving. What was your goal with publishing this memoir?
Avalanche Author on IVF
JL: I wrote an Author’s Note for my publishers and I think it gives the best idea of why I wanted to write the book. Here it is:
“A writer contemplating whether or not to begin a new work asks herself – Is this truly a story worth telling? Avalanche felt necessary. I’ve tried to tell an intensely personal story about a common experience that has largely remained unspoken. I wanted to offer a ‘shared aloneness’ to anyone who has desperately longed for a child. I hope I’ve brought into the light the way the IVF industry really works – and I could only do that in non-fiction. I wanted to transmit what it feels like to be on the so-called ‘emotional roller-coaster’, to deeply honour that complex experience in all its detail. Ways of loving, the mysteries of the body, the vagaries of science, the ethics of medicine – the material raised so many questions.
“I started writing it very soon after I made the decision to stop treatment because I wanted to capture my strong feelings before they were blanketed by time. I wanted to write something for all the women who are contemplating IVF, or currently undergoing it, or who have stopped or who are thinking about stopping (it’s so hard – the decision to ‘give up’). I wanted to speak to their family and friends. I wanted to speak to young women who in a misguided way might be relying on fertility treatment as a kind of back-up.
“And I wanted to speak to the policy-makers too. Since there is so much IVF failure I wanted to provide an alternative voice to the miracle stories we frequently see in the media. I wanted to counter the push – yes, the push – of the worldwide multi-billion dollar IVF industry.”
Q. The theme of a woman’s age comes up early on in your book, both with you seeking examples for success despite age and again as you are in the thick of treatments. Do you feel that, like with treatment, there is a misrepresentation of IVF success for older women by the fertility industry? Given the information you have now, do you think your sense of failure and choices you made at the time would have changed?
JL: It’s always good to be reminded of the low success rates. According to the CDC’s 2013 ART Success Rates (latest available), the average percentage of fresh, non-donor ART cycles that led to a live birth were:
- 40% in women younger than 35 years of age.
- 32% in women aged 35–37 years.
- 21% in women aged 38–40 years.
- 11% in women aged 41–42 years.
- 5% in women aged 43–44 years.
- 2% in women aged 44 years and older.
My own story is complicated (whose isn’t…). In a nutshell, at age 43, when I was transferring a thawed 5 day blastocyst, using my own egg, I asked my doctor what my odds were of being pregnant (please note, pregnancy not live birth). I’d seen the graphs on the clinic website showing how fertility dropped away with age, but I figured my chances would somehow be better than the average because unlike some patients my age I was responding to drugs and producing blastocyts: “Pollyanna Juggernaut could do amazing things with the numbers.”
In reply to my question about odds, the doctor said, “A Day 5 blastocyst has about a 40% chance.” I took that to mean I had a 40% chance of being pregnant – but later I discovered the 40% figure was for women of all ages. I hope that illustrates how statistics can be malleable…
Q. You talk intimately about your ‘childling,’ touching on the fact that the child is very real to you. Yet we know firsthand that those who have not experienced infertility or loss struggle with hearing about these potential children. Can you talk some about why you believe this is?
JL: When my UK Publisher, Faber & Faber, asked me to select some text to put on the back of the book I chose this passage:
“I’m an expert at make-believe. Our child was not unreal to me. It was not a real child but also it was not unreal. Maybe a better way to say it is that the unknown unconceived had been an inner presence. A desired and nurtured inner presence. Not real but a singular presence in which I had radical faith. A presence that could not be substituted or replaced.”
It felt like a key passage because it goes some way toward illuminating my heightened attachment to the child-to-be. I hope that as we talk about it more, this phenomenon will be better understood, and that with more understanding will come empathy. And I also want to mention the clinics here.
They, too, are attached to the children-to-be. You’ll see pictures of real babies all over IVF advertising – and these real babies seem to be standing in for the not-yet-child, the childing, your child-to-be. My doctor went even further – during an embryo transfer she pointed to a tiny white speck on the ultrasound screen and said ‘That’s the baby’.
Q. One of the blog tour participants particularly loved your sister’s insight to pity — that it’s about the other person. On this note, can you counter Ms. Cusk’s analogy [in The New York Times Book Review] that fertility treatments are the same as someone pursuing a career as an author.
JL: I thought the “strange half-analogy” was deeply regrettable.
Q. Women who are not mothers have long been portrayed as ‘heartless.’ More recently in the world of politics some have become punching bags — with opponents who are mothers going so far as to question ‘our’ ability to adequately empathize or be fully capable of caring about future generations. What would you say to those who hold these ideas?
JL: I don’t have much time for those who think women without children are heartless.
Q. In the case of women who try and fail to have children it seems we’re damned if try to decode our biological inability to get pregnant and damned if we don’t.You wrote about the qualified sympathy for those who sign up for IVF. (e.g. You signed up for it, so what did you expect…?) Have you found this true across all age groups and demographics?
JL: Yes, I do think there’s a qualified sympathy – at best – across the board. That said, women (and men!) who’ve had a hard time themselves becoming a parent are very understanding. One thing I didn’t expect was that women who were successful in their IVF journey would also respond to the book in the positive way they have. Many also had an incredibly difficult journey and I think they haven’t really been able to express this because – with a baby at the end of it all– it might seem ‘churlish’ to complain.
Q. Finally, given your observations that the fertility industry is a profitable one, what is the one piece of advice you have for anyone considering fertility treatments? What do you wish you knew ahead of time?
JL: Just knowing that there is an exceptionally uneasy marriage between medicine and commerce in the fertility world is a good wake up call for prospective patients. There’s so much I wish knew ahead of time that it’s really hard for me to boil it down to one piece of advice. My heart goes out to anyone who is trying now.
~~~
This perspective is particularly important as we approach the largest commercial fertility industry in the world, an event that shamelessly calls itself… yes, an Expo. It’s billed as an “Expo showcasing technology, innovations, products, and tools for your practice. Find answers, learn and network all in one convenient location.”
Nowhere in this distasteful commercial enterprise is one mention of the human toll or any concern for the patients who unknowingly step into a fertility clinic seeking help to understand complex biology. This Expo from the American Society of Reproductive Medicine (ASRM) is focused instead on profiteering from those seeking answers to a very personal question “how do I successfully get pregnant and carry a child?”
The human side of the equation is explored in detail in Julia Leigh’s Avalanche. Her memoir offers a very human, compassionate exploration of topics you won’t find at ASRM 2016.
For those who would like to learn more, check out this ABC interview: Avalanche: A Map for the Journey of IVF.
As always, welcome blog readers comments …
I couldn’t wait to read these questions and answers. I also feel an urge to try to counter the pressure from the aggressive, slippery IVF industry as Julia Leigh has done. It still irks me that the industry basically took me for a ride – I know I would prefer to have been told the bald truth upfront about my personal chances of success.
I am currently quite distracted by that “uneasy marriage between medicine and commerce in the fertility world”. It’s stuns me that websites for clinics like the one I went to still showcase deceptive and largely meaningless success rates on their front pages – just as my consultant repeated the same tired old 28% global average whenever I asked him about my own chances. The truth is, they know pretty well how individuals will respond as a patient; they are simply choosing not to be explicit about it.
The “children-to-be” is a permanent hard-sell feature of the clinics I attended here – one place was wallpapered in laminated babies, like a space-age battery farm.
I love that Julia Leigh has put her voice out there and I will continue to do so also. it certainly is hard to boil it down to one piece of advice for prospective IVFers, and there is always the fear that it looks like sour grapes because we failed treatment (which my clinic accused me of when i complained about their services – so I’m always wary of this!). But as long as the voices grow in number.
Thanks Pamela and Julia for opening up this discussion.
Yes. that ‘uneasy marriage’ Julia describes is not well understood but the profits over patient has been growing in practice.
And, as I noted on your excellent latest blog post: It is so great to have your voice in this important discussion. Thank you for raising much needed questions. Like you, I am very aware that the easy response is to sidestep and dismiss those of us who don’t fulfill the one-dimensional ‘success’ profile. It is easier to discredit critics than to address the issues we raise. We’re long past due for an honest portrayal of facts and data — and what they translate to in human terms. No more hiding behind dry, scientific or academic conclusions.