Fertile Thoughts Episode 001: Special Guest Alex Johnson
Transcript
Dr. Dixon: Welcome to fertile thoughts. I am Marjorie Dixon, the Medical Director and CEO of Anova fertility and reproductive health. I’m excited to be here and launch our very first podcast, fertile thoughts, a podcast made for TTC warriors as a new way to bring our community together. We’re here to connect, learn and inspire each other. Let’s get started. My guest today is Alex Johnson. She’s the CEO, a women’s advocate, a policymaker and a lawyer who recently published a book inconceivable about her fertility journey. 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. She’s joining me today to share her personal story. Alex, welcome. And thank you for coming.
Alex Johnston: Thank you, Marjorie, for having me.
Dr. Dixon: So for people who haven’t read your book, tell us a little bit about your story. And then let’s talk about your book.
Alex Johnston: So my husband and I started trying to have a family when I was 32. My mom had had five kids in seven years, five daughters, and I never anticipated having any issues. 32 felt pretty young to me. I went to see my doctor and my doctor said no reason to believe you’d have any issues, you’re healthy, you’re young, and try for 12 months. And if you know, God forbid anything happens, and you had any difficulty, I’d refer you to someone, but you know, we didn’t feel there would be an issue. We did try for a year and nothing happened. So we were referred to a fertility specialist. And as soon as we got in to see the specialist, which was took a little bit of time, they did a fertility workup. And I was immediately red flagged as someone with significantly reduced ovarian reserve. I was about 34 by then. So we lost about a year and a half of trying. And the doctor said you don’t have any time to lose, you’ve got very little left in your ovaries. And so we moved into pretty aggressive treatments right away, I started IVF. And I did four rounds of IVF, which was what was recommended, and that was not successful. We didn’t know if it was a problem with my eggs or a problem with my body. There was no real indication of what was going on. I just was never able to get pregnant. So we asked my youngest sister Sam, who was doing her PhD at the time in her late 20s. She would consider being an egg donor. And she said yes. So we tried with her. And we were pretty optimistic that with donor eggs, we would be successful, and I still was not able to get pregnant. So we ended up saying it’s, it’s unclear if it’s a body issue or an egg issue. But we’d heard a little bit about surrogacy, which was pretty uncommon at the time, it was sort of 2004, 2005. But we reached out to someone who had been a surrogate to another couple, who someone referred us to. And we ended up working with her and she got pregnant almost immediately using our embryos, my eggs. So we were over the moon and we sort of thought “Why didn’t we think of this sooner?” Because we had been at it for about three years by then trying to build our family and very tragically at full term day passed her due date, she went into labor and my daughter Sam suffocated in labor and delivery was stillborn. So we ended up on a very different journey that was infinitely more complicated than just facing infertility. We grieved the loss of our daughter, Sam profoundly, but we felt very strongly that we wanted to become parents again. And we wanted to have the experience of raising a child, not just having a child and losing a child. So we worked with a number of surrogates. We worked with one of them successfully. And then we found a wonderful surrogate in Ontario and a wonderful surrogate in Green Bay, Wisconsin and we said to both of them that we were planning on doing this with two people simultaneously, would they be okay with that? And they said that we would so we tried with both and both became pregnant. Our Green Bay surrogate at eight weeks call to tell us that she had miscarried and was no longer pregnant and she kept going back to the hospital because she was having all the symptoms of pregnancy and they kept sending her home telling her she had miscarried at five and a half months she called me to say I did not miscarry. They finally did an ultrasound to confirm there is in fact a baby in there. That was our daughter Sadie. So we joke that she disappeared for three and a half months and then reappeared. And then our daughter Georgia, was carried by her wonderful surrogate in Ontario, and she delivered our daughter, Georgia at 29 weeks had its own set of challenges, but we ended up on the other side with two beautiful daughters. So when my daughters were three months and six months I was exhausted and I didn’t know what was going on. I thought I had some medical issue. So I went to see my doctor. And it turned out I was pregnant very unexpectedly, with our son Lucas, and he was born totally normal pregnancy, one and only time I was able to get pregnant and he was born 12 months after his sister Sadie on Christmas Day. So we ended up with three kids in 15 months, which was, again, its own set of experiences and challenges on its own.
Dr. Dixon: I don’t have any words, I can’t imagine how hard that must have been for you. But I so appreciate and thank you for sharing this incredible journey with us.
Alex Johnston: Thank you, Marjorie,
Dr. Dixon: It is such a personal story. And you made such a difference from the policy place, why did you decide to actually let it all out?
Alex Johnston: A. I’ve never felt ashamed about it. Infertility, and the need to get help just seemed like a, you know, not a normal thing. But it seemed like it just was what it was. So it never felt shameful to me of you going through it needed to change. And so you know, you and I know that I advocated as did you as part of the expert panel, I didn’t know that the advocacy would take the form of a book. But as I started three or four years ago, listening to women in their early 30s, talk about their experience, I thought, oh my god, nothing has changed, like this is still pretty similar to what I experienced. And that was a big motivator. And I thought, Okay, this needs to move forward much more aggressively. And I said, I’ve been telling my story matters. The book originally was more policy focused, and it was soundly rejected by all publishers. And they came back and said, no one’s interested in a policy book on infertility. I was interested in policy book and infertility. And my wonderful, wonderful book agent said, we’ve got to embed this in your personal story for it to really resonate with people and through that you can embed learnings in the book, which is ultimately what I did. But this is about advocacy. For me. It’s a purposeful book, and I have written it, but the hope that change is coming. And I want to be part of pushing towards that.
Dr. Dixon: as you said, so aptly that you dealt with these barriers, and it was a scary thought long ago, and you talk to people, it’s exactly the same thing. And, you know, I do a lot of public speaking and you know, we use our social media and talk whenever I get an opportunity to put me in front of people to talk about things since that expert panel on infertility and adoption, and that was all the way back in like 2008. Yeah, yeah, I was pregnant with Gabriel. And he was born, the report came out in 2009, on the 26th of August, and it was, it’s hard to come like he’s 12 years old. And I’m still saying the same things. And patients still are lamenting the two greatest barriers to accessing care in fertility are the emotion of the journey, how difficult it is to navigate. And the second thing is the cost. And, and those are the two things that we have to do better. And so that more people can actually carry it. So it’s one of 6 and it’s not infrequently, supremely prevalent. And, you know, I think that part of what is so interesting in the book was that you were talking about how even your doctor didn’t know about gestational surrogacy and made some kind of outlandish comments about it, you’re like you’re the expert, right? Like why am I actually the expert about this? So. So I think that patients need to know that it’s not illegal in Canada with that the other thing that people keep doing, and that there is always a means of accessing care, even in the higher order assisted reproductive technologies. And now, in this day and age, everybody’s interested we do gestational surrogacy. We’re LGBTQ friendly. But for me, for Anova and for Canada, it was so important to recognize that families are diverse, right? Like there is such a diverse landscape that makes up family in Canada, single people, heterosexual couples to gay men, single dads. And that is something that I think is a tremendous gift in the book as well, because it helps to generalize like this was 2009. This is what I went through. Can we please have some organization to get this to the masses to our patients that need it? In 2021? Already? Yeah.
Alex Johnston: And we have the tools. We haven’t created access. But one of, to me the reframing isn’t so much, you know, women who need fertility help. My book is really directed at women because there is a biological component that’s very real for them at the time that they’re looking at starting their families. But it’s this fundamental desire to become a parent. We want people to become parents. We need people to become parents. Look at that, and we’re putting the value on having a child, that includes everyone. And so whether you’re a man or a woman that desires that need is very profound and people. And so I think the supports really need to focus more on that. I know even though theoretically, anything in the world is possible today is not accessible. So if you don’t have money to access, support for adoption, or support for fertility treatment is very hard, very expensive, very time consuming. And those things have to change. Those barriers are movable. And that’s something that we need to focus on moving.
Dr. Dixon: Yeah, absolutely. Well, we do what we can to Anova that’s it’s part of our mission vision, the whole idea of facilitating the journey for all comers, regardless of who they are, what their socioeconomic status, their sexual orientation, gender identity, whatever, geography HIV status, like we wanted to make access to Fertility Care for all a priority. And, and we’re not perfect at it, but we work at it actively. And I think that reading your story reinforced that while we have come away, we still haven’t arrived. And so what do you see right now as a continued barrier, that we can potentially fit like, I’m thinking about, like, trying to conceive community that are listening. And, you know, what do you think is the mini lift that we can do that can have a big effect? Yes, that’s
Alex Johnston: Yes, that’s a great question. I think there are three big gaps. The first is information. And that’s a pretty simple fix. In my mind, women are not getting information early enough to use it, women are often not getting relevant or accurate information. I understood going into building my family that 35 is the dividing line. And I felt like you’re safe before 35. And things get riskier after 35. And that was really not helpful or accurate in any way, shape, or form. I learned once I was in it, that my fertility, like your average woman had peaked at 28. And by 32, when I started trying 15% of my peer group, we faced infertility, that was big news. And I felt at the time and I feel strongly Now, every woman needs to know that, on average, most women are having babies in their 30s now, and there’s a whole host of information that should go along with that. So they’re well informed. So information is the first gap and making sure that the relationship with a woman’s family doctor is such that the doctor is raising as proactively with women early on. And really making it part of her annual medical checkup is really important, and would be a very significant change that would be beneficial to women. The second big gap is health plans, making sure businesses start to look at this as a significant health issue that it is, for young women and men in their late 20s, early 30s, mid 30s, this is often the thing that is top of mind, it’s the most important thing on their agenda, period, or their health agenda. And making sure that support for family building that fertility treatment and adoption is built into health plans is really important. This is a big issue. And the choice to have a family or not is a really important choice. But that choice being taken away from people is is profound and has very significant impacts on them psychologically, emotionally, financially. And it’s something that businesses can have a huge role in addressing. And the third big gap is government support and funding. To me, this is a very important health issue by the world has changed. Men, women, single people, same sex couples, heterosexual couples want the ability to build a family. And there are tools to do that we have to make those tools accessible to people. And I do feel like family building is too important an issue in people’s lives to simply ignore it or maintain the status quo. And governments have a big role in making options accessible to people broadly, beyond just women like myself, anyone who really wants to start a family. So those would be the big, big gaps.
Dr. Dixon: Absolutely. I think you just nailed it. And I think that might be one of the most valuable pieces of information that we could build on. I say it all the time. well trained. I am 14 years of postgraduate education. And I didn’t really learn how to talk to people at top class universities in Canada, about conception planning, contraception, contraception, everybody knows five, 6,10 ways or someway to not get pregnant, right? Like, I’m gonna put Fort Knox up there and spermicide there and it’s not getting through. Chastity belt, right? People think oh my god, I’ll slip and fall on sperm and I will get pregnant. That’s the concept that we don’t talk about, okay. It’s not taboo. I’m not saying you have to have a kid but it’s family is your own genetic progeny important to you, if not fine, but you need to understand the limitations of your reproductive lifespan by the age of 30, women have depleted their ovaries of 90% of their eggs, right? The okayness of the 10% that remains is still relatively okay function to 35. But just maybe, maybe probably just if we checked because often we don’t know when it’s not so good. And then after 37 by 40, we’ve depleted our ovaries of 97% of the eggs. 97%. And the 3% that remains is not that good. Right, so and it’s assisted reproductive technologies, it only assists what often has accelerated and it’s diminishing in quality. And so, I would love to talk to university level, like in their 20s I’ve already done like daughter’s 13 I’ve talked to all her friends but you know, when you’re in your 20s, and you’re at university, you got to talk to your parents about maybe freezing some eggs just so you have options it’s an insurance plan, hopefully you never use it, but it’s actually to have that ability now, we need to be better at normalizing it. And then not being I’m not I’m a feminist people, my sons I’m raising they know mom, Yes, Mom, I’m a feminist man, I will be a feminist man, talking about family and, and childbearing and, and planning is not taboo. It gives you options so that you don’t end up at the mercy of your biology in your 30s and 40s.
Alex Johnston: Well, I just spoke to a biology class at Bishop’s University, and I did a book event in the summer and the professor was there. And she said, Would you come speak my classes that of course 60% men, otherwise women, incredibly thoughtful questions, and I said, You’re 21-22, you don’t need to worry about this. But if we start to normalize this, that’s where this conversation starts to change. She’s now going to do a case study. And so she wants to get it into textbooks and and said, it’s not you know, you and me and different people doing one offs are starting to find the platforms where change is broader. And I do think if we can work with family doctors, it’s a huge touch point. I do think if we can start to build this into learnings and textbooks and things like that much, like conception, but at no point is anyone ever saying, if you want to preserve your choice to have a family, and that’s a fundamental choice, we want you to be able to make the things you need to start doing your 20s to protect yourself, and to inform yourself. One of the reasons why I wrote when I was writing this, people said, well, are doctors not having these conversations? I said, Look, I don’t know. I mean, I there’s no research around these kinds of issues. But what I do know is when I look at the public Public Health Agency of Canada, the federal government’s public health information arm on their website, they have that same terrible advice. If you’re under 35, try for 12 months if you’re over 35, try for six months before seeking help. And I kept saying that, but how is our fertility peaking at 28. By 32. When I started 15% of us, we’re going to face infertility, and you’re still routinely telling women don’t worry, try for 12 months, don’t bother getting help. And by 35, many more women than 15% will struggle or not be able to have kids and like it makes no sense. This is widely available information. It’s wrong. It shouldn’t be out there. We need to have better information and we need to the right access points for people to have that information early enough for them to use it.
Dr. Dixon: Absolutely reproductive biology is just don’t just contraception my dad taught reproductive biology at LCC in Montreal and I remember joking with the boys what you know I know first. But it never was anything about conception planning. I remember the library period at ACS in grade 10, where it was the story of Louise Brown’s 10th birthday, and reading about the future of medicine and reproductive medicine. And I was like, oh god, this is so for me. But it was novel. And I should have been like I wasn’t menstruating teen like I should have had some knowledge of I had great biology teachers. We knew about reproductive biology, but we didn’t ever talk about what it might mean to face infertility almost like it wasn’t a thing. And it’s been a thing for a long time. It was actually a woman reproductive biologist that started describing the endometrium and its ability to implant an embryo in 1949. Like, we have known a lot that we don’t apply to public policy to make a change for the people. If we’re thinking about the trying to conceive community, and the struggles that they face in accessing care, the least we can do is just like we’re talking about systemic policy, changing the things that will make a broader difference to how we see the issue will make it not necessarily a non issue, but a lesser issue. It’s nonsense to tell people to try for 12 months and I hear this all the time all the time. People get to me every day and I see patients that I see patients every day when I see patients, I have to say I’m so sorry that this wasn’t told to you sooner. It’s awful as a physician and I don’t know if patients know how terrible an empath physician feels when you’re like I knew, I know all this stuff, it’s in my head, it’s in our training. In fact, the research that we’re doing is looking at how we can identify genetically so we can pinpoint the genes for people early on. So they don’t just end up at the mercy of their biology. But the emotionality let’s talk emotionality, because that’s still a huge thing. So for individuals struggling with fertility, what would be a piece of advice that you would give to like to somehow encourage or you wish you had known because you figured it out? with difficulty, lots of bumps? If you could give a pearl? What would it be?
Alex Johnston: Ask for the help that you need, you will need support. And so whether that’s at work, and being transparent with the appropriate people, and saying, this is what’s going on, and this is the flexibility or support I’m going to need, these are conversations that are important to have, whether it’s with your partner, your friends, I still think there’s a lot of misinformation when I was going through this, you know, it’s like I was an alien and my friend community, no one was going through this. And so it was really like, well, what did Alex do to end up in a situation where she can’t have children and not mean spirited, but just raising this mental you’re experiencing this, you know, for a little bit, really, really pushed to ask for and get the things that you need, because this is hard. And I always said to our fertility specialists, let me manage the emotional, what I need from you is great medical advice. Treat me like your daughter, do not give me any advice is sort of wishy washy. But the curtains are on fire, the house is close to burning down, let’s put out the fire and get on. Like, let’s save the house. Oh, you your role in my life is pragmatic, best possible medical advice, the emotional piece, I will make sure that I’m taking care of that side of this, but let me do the things that I need to do that are medically necessary. And I will worry about that piece. So I didn’t want my fertility specialist to be my therapist, I wanted the person to really help me build my family and all the other pieces work social, I pushed very hard to get the things that I needed to make it to the other side, which ultimately he did. And I’d say to people, there are a lot of options. Now if you really want to become a parent, there are lots of ways to get there. There are affordability barriers, for sure. But the confidence that there is no one path. At the end of the day, however, I became a parent, I was committed to becoming a parent. And I knew someone was not going to just drop the baby off on my doorstep. But I did he feel like with all the crazy things he experienced, I didn’t feel hopeless, I felt committed to being a parent and I felt like I would. And there are different options to get there. And I would just say to someone, just keep your mind open and explore. Being a parent is the fundamental thing you’re looking for. Because there are different ways of getting at that.
Dr. Dixon: I love that you said that. I think that’s an important message also to get across to people because well trained reproductive endocrinologist fertility specialist gynecologists who specialize in fertility, they are dedicated to getting pregnant and using the tools in their toolkit to get you there. Who cares if it didn’t happen naturally, you’re now in the right place to make it unnatural, but to get you to your goal. And I think that that’s a good message for that because it is disarming. But I also want to encourage women and individuals out there trying to conceive to allow the physician to actively manage them, it’s not a sign of failure, but it’s the only way to get you to the other side. And if your goal is to take home baby, my goal is to get you to take home baby with the least amount of tries and the least amount of time possible. And that’s truly what we’re endeavoring to do for our patients. So I think that’s a great point that you bring forward that you were kind of able to separate maybe to survive the experience. But you’ve got that. Having had my own journey different but you know, transfers and transfers that failed and then going to work and making everybody pregnant. It was weird. It felt like the ultimate irony. But you know getting to the other side was keeping the grip, just grip just keep moving. Keep moving forward 8 failed transfer that totally sucked, torsed ovaries, like admission to hospital emergency surgery. Nothing like yours, but still crazy, intense.
Alex Johnston: Yeah. I say to people when they ask for basis and make sure you’re with a great person to make sure you’re in a really good reputable clinic because that doesn’t mean you’re getting there. But when I started and I walked into the neck and saw this sadness in the waiting room, and you could see if people were struggling with a heart experience, if I’m different, I’m super healthy. I’m super on top of things. I’m only 33 at this point, you know, closing in 34. This is not meant for me like that. I’m sure they’re going to They like it was a mistake, I’m sure they’re gonna give me an injection of a bunch of hormones, they’re gonna kickstart everything and I’m gonna be out here, it’ll be fine. At some point you itself, I’m not special. And I need this trusted, intelligent person who’s responsible now for my family planning, because it’s completely out of my control, to do a great job and to give me on it consistent information that I can use. And that’s what happened. But that shift had to happen. I was not special. My destiny was to be in that clinic for many, many, many years. And to trust that they knew what they were doing. And I could not be like, No, no, no, I can do it my way. We’ll get there. There’s nothing realistic about that. And that trust piece matters.
Dr. Dixon: Yeah, I mean, like I do, like I I think my patients are smart. I talk science to everybody. I share everything that I know, so perfectly, what you said, it’s exactly what you said, you know, there will be failures, and maybe you’ll get pregnant on your first try. I don’t know. But I think that if we think about framing this in a way that makes it manageable, in manageable bites and and keeping goal oriented, we think about having finite disappointments. And Martin Luther King Jr. said it best, we must accept finite disappointment. But we must never lose infinite hope. Right? Like, I think that it’s also what we do in life, when we get over our disappointments and get ourselves back up and keep moving forward, is that we have the hope that we can get across the line. And often the fertility journey for people. Alex you, like the best. I know, I feel like I have more to say and because, look, I still I have visuals of some of the experiences you described. And so I don’t know, either, we’re gonna have to have another one. And do you have any closing thoughts? Your fertile thought for closing?
Alex Johnston: Being hopeful based in reality.
Dr. Dixon: Absolutely. Amen. Thank you so much for taking the time to talk to me and us today. You are tremendous human being and you’re sharing your story, even though it wasn’t policy based as you pragmatically wanted it. So I think that this is going to be an amazing ad for all of the TTC warriors out there that are just trying to get through. So thank you for the generosity of your time, and your willingness to be part of our first podcast.
Alex Johnston: Thank you for your great work, and I hope we get to see each other in person at some point.
Dr Dixon: Yes, you too soon do we can actually hug and touch. Thank you all for listening to our very first episode of fertile thoughts. If you have a story to share with our community, reach out to us through our social media channels. We would love to have you in our next episode. Until then, remember one small positive thought in the morning can change the course of your whole day. So let’s make sure it’s a fertile one. Bye for now.
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