Sunday, July 15, 2018

Happy birthday, Louise Brown

Forty years ago (!), I was 17 years old, working two part-time jobs for the summer (at the concession stand at the local drive-in movie theatre, and at a small antique shop owned by my mother's hairdresser), and getting ready for my last year of high school, when Louise Joy Brown, the world's first "test tube baby" was born in England on July 25, 1978. "In vitro fertilization" was quite a mouthful of unfamiliar medical terminology, and I don't remember hearing the acronym "IVF" until some time later -- but the idea that this healthy, normal little girl had been born with the help of modern medicine was really quite amazing.

Of course, I never dreamed that 20 years later, I would be considering using that same technology myself, as I confronted my lack of success in bringing a (live) baby into this world, following the stillbirth of our daughter after several years of trying to get pregnant... or that 20 years after THAT, I would be living without children (and, moreover, mostly ENJOYING my childless life!!), despite the miracles that modern medicine was supposed to be able to work for me.

In fact, I never did try IVF. As I soon discovered, it's one thing to know that "well, there's always IVF...." and quite another to actually start walking down the slippery slope of infertility treatments yourself. Months of testing turned up no one "ah-ha!" reason why I wasn't able to get (& stay) pregnant. I was in my late 30s, I had a bicornuate uterus, my husband's sperm count was on the low side -- but none of these things was necessarily an issue (or so we were assured). Rather than leaping to IVF right away, as some urged us to do (given my "advanced age"), we opted for a gradual (and hopefully less expensive) approach. We tried clomid followed by carefully timed sex for several cycles, then (after a session with an infertility counsellor and some negotiating with a reluctant dh) an agreed-upon three cycles of IUIs, using injectable drugs. (I revisited my infertility treatments here on this blog, 10 years after stopping. If you're interested in reading more about that part of my journey, you'll find it in my posts with the tag "The Treatment Diaries.")

Long story short:  All three cycles failed miserably. Two weeks after the last one -- three years after the loss of our daughter -- I began having debilitating, terrifying anxiety attacks. (I thought I was having a heart attack at first.)  Physically, mentally, emotionally, I was wreck. Financially, we'd already spent more than $10,000, just pursuing the "cheaper" (??) route -- and we knew one cycle of IVF would likely eat up at least another $10,000 of our hard-earned savings. (And this was almost 20 years ago... the price tags today would no doubt be higher.)

Part of me wanted to try to push dh into agreeing to try at least one cycle of IVF -- because it was THERE, right??  But when I looked at how much doing "mere" IUIs had affected us (and not in a good way), and honestly evaluated our likely chances of success with IVF, I knew I just couldn't do this any longer. We were done. I continued to hope for a "miracle baby" for some time after that, but by my mid-40s, I knew it was not going to happen. And so we began the long, slow process of rebuilding our life together, and trying to figure out what life without children -- the life, and the children, we'd always assumed we'd have -- was going to look like.

I am happy that IVF exists. I am happy that Louise Brown is celebrating her 40th birthday with her own children (born without the use of reproductive technologies) & that she's managed to live a healthy, normal life (well, as normal as things get when you've had to carry the label "first test tube baby" all your life...).  I am happy that something like 8 million more IVF babies have been born in the years since then, fulfilling so many more couples' dreams of having a family. I'm happy that it's worked for some of you who are reading this.

But I am sad that many, many more millions of couples have walked away from IVF & ARTs without the baby they'd dreamed of.  (Not to mention the number of couples who never get the chance to even try IVF/ARTs, because they simply can't afford it.) This is the not-so-good news story that so often gets lost in conversations about infertility.  IVF works about 30% of the time, on average (the odds are better if you're younger, and worse as you get older). Now, 30% might sound like not-too-bad odds, when you're desperate for a baby (it sounded pretty good to me) -- until you consider the flip side:  that 70% of the time -- 70%!!! -- it doesn't work.  That's a pretty sobering statistic. I remember thinking, as I contemplated doing IVF at age 40 -- when the odds of success were well under 10% -- that I would probably have better luck taking my money and spending it on the roulette wheel in Las Vegas.

There's a huge number of couples out there who have faced this heartbreak. Once they've made the difficult decision not to continue with IVF (or not to do it in the first place), their only other options are to try using a surrogate (something that was still very much on the fringes, when I was doing treatment, and subject to a number of restrictions here in Canada), adopt (another whole kettle of fish...!) or continue to live without the children they wanted. Some people will try surrogacy or adoption, of course.  But given the expenses and emotional upheavals involved (especially if you've already been shelling out upwards of five figures or more on IVF & other infertility treatments, and stressing out over them), it's pretty obvious that many couples choose to simply fade quietly into the woodwork, lick their wounds and try to get on with their lives as best they can. By and large, their stories (still -- after 40 years of IVF) remain untold, their pain unrecognized.

I am sad that there is (still) so very little support available, both professional and personal, for people who wind up living without the children they wanted.  We are a large and growing segment of the population (even larger, when you add in those who have actively chosen to be childfree);  it would be nice if the world around us reflected that reality a little more often. As I have often said, I don't want pity. But it would sure be nice to have a little acknowledgement and respect for what we've been through and the difficult road we've been travelling. (That said -- there is certainly much more support available than when I left treatment, 17 years ago this summer, and when I started blogging about these issues, more than 10 years ago now.  Our numbers and our strength are growing, and becoming harder to ignore...!)

I'm also sad that, 40 years on, there is still far too much about assisted reproductive technologies that's unknown or unsupported.  It's astonishing that there have been no long-term studies of the effects of IVF, both on the women undergoing the procedure, and the children conceived though it. Moreover, ARTs have become a multi-billion dollar business -- one where oversight and regulation is often lacking. As a result, there  have been some unsettling stories about questionable clinic practices and unsatisfactory patient experiences. Clinics are happy to take your money while you're doing treatment, but the decision to stop generally ends that relationship pretty quickly. Few clinics offer counselling services for their patients, both during treatment and after it ends.

So I'm happy that there's a new movement afoot -- led in part by Pamela of Silent Sorority -- to bringing greater transparency and accountability to the repro-tech industry, so that individuals considering treatment, as well as policymakers, can make better, more well-informed decisions. Visit ReproTech Truths to learn more.

A couple of good recent articles about IVF at 40:
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Earlier this month, a group of seven childless-not-by-choice bloggers & advocates -- including yours truly -- got together via Zoom to discuss the 40th anniversary of IVF and the impact it's had on our lives -- even though it didn't result in the baby(s) we hoped for. Those taking part (besides me) included:
They will all be sharing the video of our conversation, along with their further thoughts, on their blogs/sites over the next few days (& I will add the specific post links as they become available), so check them all out! (Berenice Smith of Walk in our Shoes was unable to join us as scheduled, but produced her own video addendum to our conversation, which you can see here.)

I've been interviewed once before on an audio-only podcast ("The Bitter Infertiles," along with Pamela, Cristy & Mo, five (FIVE??!) years ago), but this was my first venture into video (gulp).  Most of these women are far more experienced and articulate in speaking publicly about these issues than I am (there's a reason why I chose to specialize in print versus broadcast journalism at school....!), but we had a blast talking to each other (some of us "met" for the very first time that day) and discussing these subjects that are very near & dear to our individual and collective hearts. In fact, we had so much fun putting this video together that no sooner did Jody hit the "off" button on the recorder than we started talking about doing it again! Stay tuned....!

Meanwhile, here's the result of our online thoughts about 40 years of IVF and what we hope to see happen in the future. (You can also watch it on Vimeo, here.)  Enjoy!! And please let me/us know what you think!


  1. Wasn’t it amazing to have us all there in one place at one time/!? That was amplified further by reading all of our recaps. So powerful to get our voices into the conversation.

    P.s. As I told Mali and Klara, Note to all who use Blogger/Blogspot - Seems Google removed all ‘non-Blogspot’ links from their reader tools as of last month (!!). Those of us on our own platforms now must reach out to have Blogspot users. Believe you need to manually re-add our blogs to your Blogroll. Please update mine with — Never a dull moment in blog infrastructure land!

    1. Hmmm.... you are still in there, Pamela, but it's still showing your previous post from five weeks ago (about Lesley's book). Thanks for the heads up, though -- I will keep my eye on this!

      LOVED being able to chat with you & all the others!! & I can't wait to do it again soon! :)

  2. Thank you loribeth for your insightful post and for sharing the video!

  3. I'm still peeved I lived too far away (time zone wise) to be included! lol Though I'm sure you represented us all well!

    I haven't had a chance to watch this and read all the blogs - I'm saving them to do when I have time to concentrate.