Well Said

Alex Johnston on Facing Infertility

Episode Summary

Alex Johnston is a CEO, women’s advocate, policymaker, and lawyer. She’s also a mother of three children, but her journey to parenthood was rife with fertility challenges. She’s championing a call to action about reproductive health, and speaks to us about why we need to be having conversations around infertility more urgently.

Episode Notes

Alex Johnston is a CEO, women’s advocate, policymaker, and lawyer. She’s also a mother of three children, but her journey to parenthood was rife with fertility challenges. She’s championing a call to action about reproductive health, and speaks to us about why we need to be having conversations around infertility more urgently.

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Episode Transcription

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Heather Reisman:
Hi, I’m Heather Reisman, and this is Well Said, a podcast on the art and science of living well. This podcast is brought to you by Indigo. My guest today is Alex Johnston. She’s a CEO, a women’s advocate, a policy maker, and a lawyer. And finally, likely her most cherished title, she is a mom of three thriving children.

Alex’s journey to parenthood was not an easy one. On the contrary, it was unexpectedly a five-year-long struggle through fertility challenges, medical procedures, uncertainty, and loss. That five years was also a period of discovery for Alex, as she came to understand how much we never were taught about fertility, and how much better-equipped prospective parents must be to best advocate for their needs.

Alex’s book, Inconceivable: My Life-Altering, Eye-Opening Journey From Infertility to Motherhood, is the story of her experience. She shares her pain, her joys, and the hard lessons she learned along the way. This is a personal narrative, as well as a work of advocacy, that should be read by every adult who imagines having a child.

It’s an honour to welcome my long-time friend, Alex Johnston, to Well Said.

Alex Johnston:
Hi, Heather.

Heather Reisman:
It’s so good to have you.

Alex Johnston:
It’s so great to be here.

Heather Reisman:
So first, before anything, how are the kids? Like how old are they now, and what are they up to?

Alex Johnston:
The girls are 12, and they’re 3 months apart, because they were both, ah, carried by surrogates. So today they were referring to themselves as “fake twins.” And my son, who was our very surprise baby, oops, is 12 months younger than his second sister.

Heather Reisman:
So they’re all doing well.

Alex Johnston:
They’re all doing great.

Heather Reisman:
Fantastic.

You said that you wrote Inconceivable, and this is—I’m quoting you—“as a call to action regarding reproductive health.” And you’re actually donating your royalties from the book to reproductive health advocacy groups. Just tell us why you were so compelled to write it. And why is it so important for us to increase the awareness and the visibility around the entire issue of fertility?

Alex Johnston:
I was compelled to write it even when I was going through it. And I didn’t imagine the advocacy would come out as a book. But even in government, when I was going through fertility treatments, I was the premier’s director of policy and I was advocating really hard for this issue to be taken more seriously. And we ended up putting it in a re-election platform. And then he eventually appointed an expert panel of people to look at what more we can do on adoption and infertility treatment.

I felt very strongly that we needed to do more then because, as soon as I was in it, I realized how prevalent it was, how much there is that we can do to avoid ending up in the situation I ended up in. There are lots of complicated problems in the world that we can’t solve that easily. There are really basic things we can do here that will be game-changing. And getting information into women’s hands early enough for them to use it is a big step; and we’re still not doing that nearly as well as we could.

Heather Reisman:
So, how old were you when you and your husband decided it’s time to have a child?

Alex Johnston:
We were 32. And we actually were on a wonderful trip to Italy. And he looked at me and he said, “I think I’m ready to become a dad.” I said, “Fantastic.” I understood, until that point, that 35 was this notional dividing line: before 35 you were safe; after 35 it was more risky. So I felt like I was super-organized and really proactive, at 32 and starting. We got the typical advice, which is, “Try for 12 months. No reason to believe you’ll have any issues.”

After 12 months it hadn’t happened. Eventually I was referred to a fertility specialist. And that’s the first time I got my fertility workup done. And alarm bells went off all over place. And I said to my fertility specialist, “But I’m 34.” And she said, “Alex, by 34, 20 per cent of you are going to face infertility.” And I thought, “How am I having this conversation for the first time, when I’m in the thick of it, and I had no idea any of this was a problem?”

Heather Reisman:
So 32, you said, “OK, my biological clock is ticking but I still have time.” But then they tell you to try for a year. And then a year is nothing. And then you’re—you’re moving past it. And so you finally, you’re 34, and then you finally realize the alarm bells go off. And you never—I think that’s interesting. No doctor, no GP, no gynecologist—nobody had ever suggested at 25 that you test your fertility levels. Nobody had ever had any discussion with you, ever.

Alex Johnston:
No. I didn’t even know that existed. I didn’t know it was a thing. I didn’t know you could get it done. And then in the fertility specialist’s office, we’re doing these really basic tests and getting great, useful information. And I couldn’t understand why we hadn’t done it much earlier.

Heather Reisman:
I mean, I’m way past the stage where I am thinking of having a baby—given I have four children and 11 grandchildren—and yet that experience of being pregnant is still so clear. And I read the book in one sitting. I—I thought it was incredibly moving as a personal story and amazingly relevant. And we’re going to talk a bit more about the advocacy. But I want to stick with your story for a bit. Just share a little bit about the sort of critical moments in your journey, from the moment you began to be aware of the fact that you would have challenges getting pregnant through the next five years, which is a long time.

Alex Johnston:
Even when I was in a fertility specialist’s office and clinic, I still didn’t think I’d end up there. Like I really thought they’d kind of give me a poke and a prod and say, “You’re not meant for this place. You’re healthy. And you’re not going to have big issues.” And I didn’t know anything about treatment. And it became clear after a year’s trying different procedures that I was not going to get out of this easily.

So we ended up doing IVF. And I was trying to carry. And we tried the recommended number of procedures, which was four. And that didn’t work.

I then asked my youngest sister if she would consider being an egg donor for me, because we didn’t know if my eggs were the problem or my body. She very lovingly said, “Yes.” So we tried using her eggs and me carrying. And that didn’t work. Which was very surprising.

And then we said, “Well, maybe carrying for me is the issue.” And so we moved to surrogacy. And it was pretty unusual at the time. This was 2003, 2004. I found a surrogate who had done this with another couple about a year earlier. And we worked with her. And she was able to get pregnant very quickly using our embryos and then very, ah, tragically our baby died in labour and delivery, at full term.

You know, the loss has been real in our life. It’s impacted us in many ways. I didn’t want it to be the defining experience of my life. It was certainly a defining experience. But I think of that nine-month period waiting to become a parent as joy. In a way, you lose something after losing a child that you can’t get back. And that innocence and that feeling of joy is what I associate with that nine-month period—just the “This is going to happen. I’m going to become a mum.” And it turned out, obviously, very differently.

Heather Reisman:
So then take us through, because from that, which must have been the depths of the experience, what were the next critical moments?

Alex Johnston:
You know, we ended up really pursuing two paths. One was grieving like crazy. It was an all-consuming experience. And within four to six weeks of burying our daughter, Sam, we said the only way through for us is to become parents again.

And so we started to try to find another surrogate. We did work with someone for a year, and tried five times, but were not successful.

And then I ended up going to my fertility specialist, and I said, “This has to come to an end.” I said to him, “This plane has been travelling for too long. Someone’s got to land it.” And I said, “I’m going to try to work with two surrogates.” My middle sister, Sharon, who is a doctor, very beautifully said she’d be my backup egg donor if I needed it. And we put together a small military operation. And then I said, “Someone has to get pregnant somewhere. And we need to become parents again.” And we did.

Heather Reisman:
Talk to us a little bit about going to get the baby and how that all happened.

Alex Johnston:
Well, so we ended up finding two different surrogates. And we said to each of them that we would be considering doing this with two people. And they said they would be comfortable with that. Both ended up getting pregnant. One at eight weeks called and said, “I’ve miscarried and I’ve lost the baby.” And she was a—our wonderful surrogate, in Green Bay, Diane. And so we sort of processed that. Debbie, our Canadian surrogate was pregnant, ah, with our daughter, Georgia, at the time.

And Diane, at 18 weeks, called to say, “I have gone back repeatedly to the hospital to try to get an ultrasound because I still feel pregnant. And they told me I was having a fantasy pregnancy.” It turned out she was pregnant, so she had not lost the baby. Now, she may have miscarried a twin. She did not miscarry our daughter, Sadie. So at, I guess, five months they realized there was a still a baby.

And then shortly after that, we got a call from our surrogate, Debbie, who had a ruptured uterine sac. And she was airlifted to Women’s College Hospital and put on bedrest. And then at 29 weeks our daughter, Georgia, was born 11 weeks early. So that had its own set of fears and challenges. She was two pounds, 15 ounces.

Heather Reisman:
Wow. Smaller than a chicken.

Alex Johnston:
Yeah. She was like a little chicken. She was a little chicken.

Heather Reisman:
Wow. I mean, this is like you had everything happen. I mean, it’s—it’s almost unbelievable. So I remember that little part in the book where you talk about this little tiny baby in the NICU. And how old was she when you brought her home? And did you bring her home before the other baby was born? What was the time frame?

Alex Johnston:
We brought her home a month before. And I ended up on an epic road trip with my dad—who is a wonderful driver and wonderful human being—because Georgia had just come home after about 10 weeks in the NICU, and so David stayed with her, and I was going down to Green Bay for the birth of our daughter, Sadie, which was going to be December 22nd. And my dad asked me, a month before the birth, “Who are you bringing with you?” And I said, “Oh, my god, dad, I’m bringing you. Did I not tell you?” And he said, (laughing) “No.” And I said, “OK. Well, I need you.”

So he ended up rearranging his schedule. And he drove down with me. And I said, “This has been a long journey, and I don’t know what it’s going to be like bringing a 24-hour-old baby across the border. But I know I’m going to need someone who knows what they’re doing.” And he was that. So he and I drove down. He was there for the birth of my daughter, Sadie.

Heather Reisman:
So those two babies come home. You’ve now—you’ve now got two babies at home. Then whoops, you end up with a third.

Alex Johnston:
Yeah. So I was so tired. And I thought, obviously, I’ve got a three-month-old and a six-month-old at home, I could hardly move. And I finally said, “I have to see the doctor, because she’s going to tell me I have narcolepsy or something.” And I ended up, before going, taking a pregnancy test. Just in case she was going to do X-rays and stuff like that to rule it out. And it turns out I was pregnant. And I was, I think, 11 weeks pregnant by then, so I really had no idea.

I sat David down that night. And I said, “I have pretty surprising news.” And then we sat in silence. And he finally said, “Are you sure I’m the father?” I said, “Yep. I’m pretty sure you’re the father. There’s no other dad in sight.”

Heather Reisman:
As you said, an experience like the series of experiences is just life-changing in so many ways. And it changes who you are as an individual. Your personal story makes your commitment to the advocacy—which is, after all, a place you come from. You come from public policy. And you and I have had discussions about elements of public policy and adoption before.

Alex Johnston:
Um-hmm.

Heather Reisman:
There’s just nobody better than you, Alex, to be writing about the subject—but more important than writing, advocating for it. Share a little bit about what, if anything, has happened since. Like what do we know about fertility? When should we know about it? Who should be teaching it? How should those who want to get pregnant understand the process?

Alex Johnston:
First of all, I think we have to start having the conversation around infertility with some urgency. For the first time, in 2010 the majority of women in Canada were having babies in their 30s. And what I learned going through this is our fertility peaks at 28. I don’t want any woman to feel pressured to have babies before she’s ready, but I want her to be informed.

I feel like this is something that has to be integrated into a woman’s annual medical checkup. So proactively, these wonderful doctors we rely on and trust, who have this privileged role in our lives, need to put fertility on the table early enough that it’s not going to frighten someone who’s 35 and might not have all the pieces in place, and just start to do routine fertility testing—like you would with lots of other potential health issues.

If we started this with women in their late 20s, and you just started to track it, someone like me would’ve been redflagged saying, “Your window is shorter. Your fertility is speeding up pretty quickly. And you’ve probably got a shorter window than most women.” And for some women they’ll have a longer window. But it’s identifying kind of your own biological clock and giving you information about it.

Heather Reisman:
What’s your feeling about egg freezing?

Alex Johnston:
I’m hugely supportive of options—period. The reality is egg freezing is such a tiny option for most women. Most women will never have access to the money or the fertility benefits, you know, barring dramatic changes in health plans, for that to be a realistic option. So I do think it’s a small subset of professional women who are in Silicon Valley-type companies, maybe eventually our banks and—and companies like that would—would make this possible.

I do feel like to be 32, 33, 34 and not have pieces in place to feel like you can build your family, it’s great to actually have something where you say, “I don’t want to be frightened. I don’t want to feel like every date I go on I’ve got to put someone on the spot and say, ‘How fast are we going to get this going?’” I think that you want women to feel calm.

I always felt with surrogacy, you know, if someone would say, “Isn’t it convenient that someone else carried your baby?” It really isn’t. I wanted to carry my babies. And—and yes, there were things that went along with someone else doing it that I didn’t have to experience, but I don’t think most women want to outsource it. My own feeling is most women probably don’t want to freeze their eggs. They just want to be able to have a normal pregnancy experience and conceive naturally if at all possible. And once it becomes medicalized, it’s a very, very different experience for anyone.

Heather Reisman:
I recognize, too, that at the moment some of these things are expensive. But the question I was going to follow up with is: should it be? Like for those people…. Let’s say, for the people who need to for any reason, shouldn’t it be something that is not prohibitively expensive, that is something that we find a way to support?

Alex Johnston:
We’re in the 21st century, and there’s no end of things they can do to build families. I think the basic step is information in women’s hands. I think the second step is how we make financing and funding more available to men, women, same-sex couples, heterosexual couples, individuals. I think egg freezing is a part of that; I don’t see that as the dominant solution to this problem. I really do think infertility treatment and IVF is a much more important procedure to be looking at funding, because it impacts so many people.

Heather Reisman:
So you’re really big on education—information and education. Women need to know what the curve is and what the risks are—that it’s just not axiomatic that you can get pregnant if you want. And then, should you need access to infertility help or surrogacy, your feeling—if I hear you right—is that that should be a much more open, readily accessible experience for those who need it.

Alex Johnston:
One hundred per cent, yep. And in—in exactly that sequence: the information is free and it’s a very easy step for us to take if we’re more organized and deliberate about this conversation; and then support is equally important a second step.

Heather Reisman:
How much success are you having getting every gynecologist across the country, every primary care physician across the country, to be sharing this information?

Alex Johnston:
I don’t know what will come out of the book. My hope is it has a meaningful impact. For sure I’m starting to reach some of those audiences. And—and two advocacy groups the royalties go to are doing exceptional work. And so they’re doing it broadly. But the conversation has to take off. And we need more traction.

And what I say to any doctor is, “You have this incredible role in our lives. And this has to be top of your list in terms of things you’re going to proactively put on the radar of your female patients, because them not having a choice is significant, and if you can do something to help them be informed, and aware, and preserve their choice, that’s an incredible role for you to be able to play. Avoiding talking about this because you don’t want to make them nervous or uncomfortable is not an option.”

So I don’t know where this conversation will go. It has to happen more assertively. It has to happen much more broadly. And we’ve got to keep saying to doctors, “This is not about blaming you. Or this is not about putting you on the spot. This is simply you owning this incredible place and role you have in our lives. And this is a really important issue, and we don’t want to ignore it.”

Heather Reisman:
When you think about the agony it causes to people who are trying to get pregnant—some of whom never do—who might have been able to under different circumstances, or what people go through in as long a saga as yours, I think if anybody could help push us in the right direction in the best way possible, Alex, I can’t think of anybody better than you—in so many ways, not just the book, but the way that you have directed your life on issues of policy in so many ways.

We’re so fortunate you wrote this book. I truly believe it’s a book that every single young woman who is thinking at some point she wants to get pregnant should read. And I really think every woman of my age, or a little bit younger than me, who aspires to be a grandparent should read it; because they would read it and then give it to their kids.

I’m grateful that you wrote it. I’m grateful you sent it. Your resilience is inspiring. And I—I can only say, I not only thank you for writing the book but don’t give up. I hope you have energy in you to inspire this transformation in the medical profession on this issue, because it is so very important.

Thank you, Alex, it’s been a joy.

Alex Johnston:
Thank you so much, Heather.

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Heather Reisman:
Thank you for tuning in to our conversation with Alex Johnston. For more ideas to help you live well, including the book featured in this episode, Inconceivable: My Life-Altering Eye-Opening Journey from Infertility to Motherhood, visit indigo.ca/podcast.

If you enjoyed this episode, please leave us a rating on Apple Podcasts. You can follow us wherever you listen to your podcasts.

Well Said was produced for Indigo Inc. by Vocal Fry Studios and is hosted by me, Heather Reisman. Thanks for listening.

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