Ep 89: The First IVF Baby in the United States with Elizabeth Carr
Fertility Forward Episode 89:
Today on the Fertility Forward Podcast, we welcome a very special guest, Elizabeth Carr. Elizabeth was the very first baby born, in the United States, via in vitro fertilization! Elizabeth has been in the media since she was 3-cells old and is a passionate advocate for those fighting for fertility rights. From battles over insurance coverage to educating doctors on how to interact with patients going through fertility treatments, to advice for parents on how to talk to children about assisted reproduction technologies. She is proud to share her voice and story in order to fight for those who may not be able to fight for themselves. As a dynamic speaker, Elizabeth’s passion lies in education, from helping companies craft fertility benefits packages, and parental leave policies, to keynote speeches, to sitting one-on-one with people facing fertility questions head-on. Tune in to hear more about this remarkable story, you don’t want to miss out!
Rena: Hi everyone. We are Rena and Dara and welcome to Fertility Forward. We are part of the wellness team at RMA of New York, a fertility clinic affiliated with Mount Sinai Hospital in New York City. Our Fertility Forward podcast brings together advice for medical professionals, mental health specialists, wellness experts, and patients, because knowledge is power and you are your own best advocate.
Dara: In honor of National Infertility Week, we have on today, a very special guest. Elizabeth Carr is the first baby born via in vitro fertilization in the United States. In the media since three cell, old Elizabeth is a passionate advocate for those fighting for fertility rights. From battles over insurance coverage, to educating doctors on how to interact with patients, going through infertility treatments, to advice for parents on how to talk to children about assisted reproductive technologies, Elizabeth is proud to share her voice and story in order to fight for those who may not be able to fight for themselves. Elizabeth is a fearless patient advocate, striving to educate and empower people based on her life experiences and expertise within the fertility world. She's presented to audiences around the globe, including at the United Nations, ASRM, the European Society of Human Reproduction and Embryology, and the National infertility Association: RESOLVE. As a dynamic speaker, Elizabeth's passion lies in education from helping companies craft fertility packages and parental leave policies to keynote speeches to sitting one-on-one with people facing fertility questions head on. Elizabeth is also a marathoner, triathlete - Wow - coffee connoisseur, mother, and writer. She also just recently joined TMRW Life Sciences as Director of Product in Clinic Marketing. Wow. Elizabeth, we are so happy to have you on today.
Elizabeth: Thanks for having me. I'm glad to be here.
Rena: Yes. And we were talking before and, and you said you have a Wikipedia page. So I feel like we have a real celebrity on today.
Elizabeth: It's not at all. It's cracked up to be, I have a Wikipedia page, but yes, I do.
Dara: I think it’s pretty impressive.
Rena: Yeah. I mean, what a cool guest to have. I mean, we're so excited to share your story and, and hear from you. And I know our listeners are gonna be so interested in this episode
Elizabeth: Of course. Glad to be here.
Dara: Yeah. So you have a very, I'm sure unique conception story being the first baby born via IVF in the U.S. So take us back. When were you told this story and what is your story?
Elizabeth: Sure. So I guess the elevator version of, of how I got here is my parents struggled for many, many years. Right after they were married, they knew they wanted to have a family. And my mother could get pregnant, but couldn't stay pregnant. So she kept having what's called an ectopic pregnancy, which basically resulted in a lot of internal bleeding. And basically she nearly died three times. They finally figured out the reason she was having these ectopic pregnancies was some scar tissue due to an, a botched appendix surgery when she was in her twenties and her doctor at the time said, well, this, the best thing for us to do is actually remove your fallopian tubes, which for anybody who doesn't know that, you know, the fallopian tubes are kind of an important part and if you want to have a child, you know, the quote unquote regular way. So essentially her doctor said to her, you know, there's no way you're going to have children of your own and what, you know, maybe you should look into adoption or something else. And then on a follow up just to make sure she was in good health, you know, post tube removal, her OBGYN basically flung a one page Xerox brochure across the table at her and said, I just came back from a conference and learned about this thing called IVF. And they were successful at it in the UK and I know that there's a program trying to get off the ground here in Virginia, in the States. Maybe you should apply to the program. So her doctor wrote a letter of recommendation. She applied to Drs. Howard and Georgiana's program and looking at her medical history, she was young, she was in her twenties. Really, the only thing they said to her was how soon can you get here? And they were off to the races.
Rena: Wow. That's so crazy, isn't it? It's so amazing. You know, one person can change your life like that. Right. I mean, imagine if that wasn't her doctor and hadn't been to the conference and hadn't gotten the information, you know, that one person changed the whole trajectory of, of her life and, and of course yours.
Elizabeth: Right. Yeah. And I think that, that kind of leads me into the, you know, the reason I'm so passionate about letting people know all the various options that are out there and available to them is exactly that reason. Right? If my mother hadn't have learned of that option from her doctor, and to be lucky enough for him to know of that option himself, I probably wouldn't be here.
Rena: And how brave of your mom to say, okay, you know, something that was new here and sign herself up. I think that's extremely brave.
Elizabeth: I think both my parents were kind of at the point where they figured it wouldn't hurt to try one more thing. Right? Like they had been through so much already that it was like, why not give one, one other thing, a try. They were very realistic that this had never been done in the States before and that it may not work. And they kind of had those conversations themselves, but they were ready to give it a shot. And I think the relationship that they ended up having with the doctors, the doctors really kind of let them know, like, no matter what happens, we're going to make sure that you're taken care of and you're in good hands.
Dara: So they were reassured.
Rena: And did your parents then, were they based in Virginia or they kind of had to relocate for treatment?
Elizabeth: No, this is the craziest part of the whole story. So IVF was actually illegal in Massachusetts at, at the time, which is where my parents lived. And so they applied to this program in Virginia and ended up being accepted into the program, but my parents ended up flying back and forth for the checkups and things like that. Like they, you know, wanted to keep Massachusetts as their home - that's where all their careers were. So I, I was born in Virginia and basically the last month before I was born, they ended up renting a little condo down there just temporarily to, to make sure that everything was fine, but no, my parents flew back and forth for all of her treatment.
Rena: Wow. And, and what was her process? Did she have a long road? Was it relatively seamless?
Elizabeth: Yeah, I mean, so remember this is back in the days where they didn't have set protocols. So there, my parents were not the only ones in the program going through this, you know, process. There were a group of probably like 10 other couples and everybody had their own individual protocol. So you couldn't compare notes because nobody knew what would work and what wouldn't work. So, you know, comparatively speaking, she, she wasn't, she couldn't even tell you if it was a long road or a short road, because there was, they were making the road at the time, literally trying to figure out what was gonna work and what wasn't. But I was, they did the transfer on my mother’s birthday, which was April 17th. And then she tells a cute story about the doctors coming in with a cupcake and on the day of the transfer and singing her happy birthday. So, yeah.
Rena: I love that. That's so symbolic. You know, and I know I ask about the travel because of course, you know, so many of my patients, our patients, you know, worry about, about that. And especially, you know, in the pandemic when people are kind of moving around, you know, and how to travel for treatment, if they wanna go to a certain clinic, how can you make it work? And that can become very stressful.
Elizabeth: Right. Sure. I mean, it was not simple for them to travel to and from, but that's, they just kind of, you know, knew that this was gonna be a, a potentially bumpy road anyway. And so they, they kind of viewed it as like, this is what we signed up for.
Dara: Wow. They took a leap of faith. I find that remarkable. And it, it appears as though, you know, they informed you about all of this. Was it something that they told you about at quite a young age, or was this something that they waited until you were much older?
Elizabeth: Yeah. So that's always a tough question for me because I joke that I've always known how I got here because, you know, literally there's a photo of my cells at three cells old and my first press conference was at three days old. So I honestly feel like I've always known how I got here. But, you know, they had the same conversations with me that normal parents do of, you know, mommy and daddy couldn't have you without the help of some very special doctors. And when I got a little bit older after that, you know, it become, became a little more complex of, you know, I remember being seven and sitting down with Dr. Howard Jones and Dr. Georgiana on each side of me and watching the Nova documentary documenting my birth. And so I had two pioneers in the field explaining to me in great detail at age seven, everything that was happening on the screen. And that's honestly how I learned the elevator speech of how I was born from was from Dr. Georgiana telling me, well, it's sperm and an egg fertilized in a Petri dish and once it's fertilized, it goes back into the mother's womb. And nine months later here you are like everybody else. I literally learned that sentence at seven years old from her, and I've been saying it my entire life.
Rena: Wow. And was this something, you know, obviously as kids get older, they start to talk, is this something you kinda shared from that young age with peers? Was it this sort of badge of honor, or did you feel weird about it or…
Elizabeth: I didn't really have an option of if I could share or not. Let's put it that way. You know, I've been followed by the media, my entire life. So any major reproductive development that reporters would come calling or any major life milestone, you know, when I turned 10, people wanted to make sure that I was still normal. Spoiler - I am. You know, so just little things like that. I really have an option of whether I wanted to tell people or not. It was just kind of always out there and it was in the world. And then when I became a little bit older, you know, it was always interesting for people not in the fertility space when they would see me on television or in an article or whatever, they would always say, well, you didn't tell me that that's who you were and my, my line was like, well, how often do you bring up how you were born? Well, I was born, you know, in such and such hospital and I was a natural birth and my mother didn't have an epidural. Like, you don't have those conversations in everyday speaking to people. So I always find it funny when people say, you didn't tell me that's who you are.
Dara: You, you make a good point in terms of, in terms of expectations, how people have those expectations of you, just because you have this unique story. But you know, the idea of like, oh, you know, where were your parents? Where do your parents conceive you? In New York and in Miami, on the beach? You know, it, it, it's not a typical discussion. And in, in many ways this was, you know, you have a very unique story and it it's interesting that you've, I, I find it remarkable that you are open to, to sharing it partially because it is such an incredible story to share. It really can help people be educated on it, but remarkable on you that I'm sure you've had to tell this story time and time again.
Elizabeth: Sure. I mean, like I said, I've been, I've been sharing how I was born since I was little, but I always had it impressed upon me from just my parents' personality and how they kind of lived their life that we've always viewed it as if I have a lack of privacy. It's going to be worth it in terms of helping educate people about what's available and what's out there. And so it was like, well, so what? I have to talk on on the same topic that I've been talking about my entire life for 10 extra minutes, you know, it's, it's important that people know what's out there.
Rena: And it sounds like this has, you know, completely shaped your life too in your work today.
Elizabeth: Yeah, absolutely. I mean, I've always had a, I call myself science adjacent because I'm not a scientist, but I've always had a love and affinity for science. And then in terms of talking with people about what has changed, right, since I was born 40 years ago, we've come so far. And that's one of the reasons that, you know, TMRW Life Sciences was so interesting to me was this was really the first time in, since in 40 years, essentially, that a major component of the IVF process is changing and becoming better and taking advantage of cutting edge technology that wasn't available. And, you know, that's kind of how was how the feel has always continued to evolve. Sseeing what the newest best practices of the moment and just letting people know the questions that they can and should be asking in terms of, you know, a fertility journey right down to, you know, what do you have on site for technology? What do you have on site for health and wellness? What, you know, all of these all encompassing things that were never even a thought back when I was conceived.
Rena: Yeah. So tell us a little more about TMRW Life Sciences and the new technology.
Elizabeth: Yeah. So the technology is essentially TMRW has created the first, world's first - and I love saying that because I'm a first. It makes me very happy to utter that sentence - the world's first automated platform, really, for the specimen management of eggs and embryos in, in the IVF process specifically. So, you know, think about all of the different manual pieces that we all know that go through to go through an IVF process, TMRW is really helping streamline and automate parts of that process so that the embryologist can really focus on doing what they do best, which is the embryology instead of, you know, manual record keeping and a lot of the admin tasks that have to go through. And then just in terms of, again, when I was born, we didn't have this volume problem that is upon us now, which is, you know, back when I was born, we didn't know how to freeze eggs and embryos. Right? Now, we do. And now it's part of standard procedure almost. And so that creates this kind of, like, volume problem of like, where are we going to put all of these things and how are we gonna manage them all at a large scale? And that's where TMRW comes in.
Rena: Wow, that's incredible.
Dara: So are, are they actual devices that are in different clinics that are used in different clinics? Or is this something that's in house that's done separately?
Elizabeth: It's the, so there are different pieces of our ecosystem. And a lot of it is starting from like a piece of software that helps the specimen management and the embryologist kind of follow everything straight through. And then we actually have onsite devices and storage solutions, as well as the specimen management that are live in, in clinics right now.
Rena: Wow. It's so incredible. I mean, I did IVF, I started like seven years ago, my daughter's five and a half. It was about two years, even in that short period of time, the technology and everything that's changed is, is incredible.
Dara: I was thinking the same thing. I have a, a 10 and 12, a 12 year old, both IVF babies and the advancements every single year. And I feel like more recently, it it's, we seen such a huge change for the positive in terms of the advancements it's, it's remarkable.
Elizabeth: Right? Yeah and I think that that's, you know, back to when my parents were going through it, everybody in their little cohort had a different protocol, but the same can, can also still be said to a certain extent in terms of what different clinics do in terms of their protocols in treatment plans for specific patients and the demographics and, and so, you know, I think now there's just so much more information out there and, and patients exchange that information. Whereas, you know, back when I was born, nobody was talking about any of this.
Rena: So what are some of your goals? You know, especially as we embark on National Infertility Week? You know, know moving forward with the, the space and sort of the dialogue and conversation around, you know, infertility, infertility treatment?
Elizabeth: Yeah. So again, my personal, you know, stake in the ground is always that education and advocacy piece, so that letting people know all of the different options that are out there, what's available, what technology is now coming onto the market, or is in the market. And then my other, I call it my other day job really is fighting the insurance battles because you know, all of the coverage is not universal and the same. If you go state to state, it's all different. And helping people understand that. I think many patients I've heard from don't understand or realize until they're going through a fertility treatment, that it may not be covered in their particular state. And so again, surfacing that information on the front end so that they're not trying to figure out in a moment of crisis, how they're going to pay for this or how they're gonna make it work. Those are kind of my two main goals and, and have been forever because we're still not there. We're, we're not there yet. As far as we come, we, we're still not there.
Rena: Sure. Yeah. I mean, totally agree about the insurance, you know, and cost should never be a barrier to family building. And I think we've come far, but there's a lot to be done in that front, for sure.
Dara: Well, we would love, I'm sure our listeners would love to know more about you and what you do. Do you have an Instagram handle that they can connect with?
Elizabeth: Yes. I was joking with a colleague earlier this morning. I am not on TikTok. My 11 year old keeps telling me I need to be, but I am not there yet, but my handle is @ejordan12 on Instagram. That's the easiest way to find me. And then obviously it's @tmrwlifesciences on Instagram, if people wanna learn more about TMRW as a company and our mission and really what we're trying to do and where we are. And obviously people can follow me from my Instagram onto my website. And I am one of those people that I will never not answer an email from a patient or somebody who wants information that is just, you know, I answer all of my own emails. It's still really important to me. And there's no question that's outta whack or there's no stupid questions essentially to ask me. I am, if I don't know the answer, I'm always the kind of person who's gonna go find somebody who does know the answer. And that's just my purse kind of mantra and motto.
Rena: Well, we are so happy that you took the time to come on and share your story and information and your goals. What a fantastic episode, you know, for National Infertility Week and then in general, too, and in such a great person to have on we're so thrilled that you took the time.
Elizabeth: Yeah, I really appreciate you having me.
Dara: So how we like to end our episodes is with some words of, of gratitude. So we're asking you today, Elizabeth, what are you grateful for at this very moment?
Elizabeth: I think every day, I'm just grateful that I get an opportunity to talk about all this. That's truly the biggest privilege I have in my life is that I get to do this. I get to help people on a daily basis and it is not lost on me that that is a very privileged position to sit in. And so I'm eternally grateful for all of the stories that people continually share with me and for being in a field where I know we're always striving to continually do better.
Rena: I love that.
Dara: Rena? What are you grateful for today?
Rena: I will say, you know, I feel like I say the same thing all the time, but you know, so grateful to connect with another person who shares the same visions and goals and passions about the space and helping people and insurance reform and advocacy. You know, I think the more we raise our voices and the more we stick together, the more we're gonna get done. And so it's always so uplifting and really wonderful to meet other people with shared visions and, and goals. You know, I think all of us, you know, the three of us on this, this podcast got into this space because of our own experiences. And we meet so many people who that's the case, you know, they went through it and then wanted to make a change. And so it's really amazing. And one of the things I love most about my work is meeting other people who got into it because of their experience and wanna make it better. What about you Dara?
Dara: So beautiful. Piggybacking on, on both of you is I'm just grateful for the people I come across in this space and hearing their stories and hearing how open they are and how through sharing and through their stories. We're really destigmatizing a topic that really should be destigmatized. It's, it's something that I would think almost everyone in this world knows someone who has been through some sort of fertility struggle and just hearing more stories and hearing more about, you know, education and awareness and an advocacy really is helping us all move, move forward, and we're seeing growth in this field. So I'm just very grateful for both of you guys and for what we all do.
Rena: Lovely. Well, thank you so much again for coming on and sharing your story and information.
Elizabeth: Yeah. Thanks for having me.
Dara: Thank you so much for listening today and always remember: practice gratitude, give a little love to someone else and yourself, and remember, you are not alone. Find us on Instagram @fertility_forward. And if you're looking for more support, visit us at www.rmany.com and tune in next week for more Fertility Forward.