On this episode, Kelly talks with Jennifer Miller Gobrecht, NN, who was the first woman to give birth via a deceased donor uterus transplant at Penn Medicine in Philadelphia. To learn more about clinical trials, visit clinicaltrials.gov.
Disclaimer: This transcript was developed with an automated transcription program, spelling and grammar errors may occur.
Welcome to the Alpha Connect Sisterhood Series podcast. I'm your host, Kelly McGinnis Beck, national president. This podcast is all about sharing the stories of our members and our connection through Alpha Sigma Alpha. Thank you for joining us today. Welcome to the podcast, Jen Gobrecht.
Thank you so much for having me.
I'm excited to share your story today. But before we get to that, like I do with every guest, tell us your Alpha Sigma Alpha story. How did you become a member?
Well, I attended Drexel University, and I was a business student. And I had this amazing TA in all my business classes, she was this wonderful, brilliant woman. And one day, she said that her sorority was recruiting members. And I just had to check it out. And quick story short, I became a member in the spring of 2006, of the Nu Nu chapter of Drexel University. And that TA became my big sister, and has been a mentor to me and a close friend for many years. And just somebody I really look up to, and I think she really exemplifies so many of the wonderful values of Alpha Sigma Alpha, that, you know, being a part of the chapter and of that sisterhood was a no-brainer.
That's awesome. So spring, was that formal recruitment or informal recruitment? I can't remember on that campus
It is informal recruitment.
Okay, so it was more of like a COB type?
That's a very different experience than going through formal recruitment.
Yes, it was definitely more intimate, there was only five people in our membership class. And I think that that also, I think, led to really getting to know a lot of the sisters, it wasn't overwhelming, you really felt at home pretty quickly, getting to meet a lot of the sisters, and just really seem that they all had such amazing energy. A lot of them were business majors. So they were a great points of, you know, resources for especially somebody. And you know, with Drexel University, there's a very high male population, but a very small female population. So being like leaders in the, you know, area of business, and you know, it'd be more of a male-dominated area and a male-dominated school, it was so great to see just these very dedicated and hardworking women being examples on campus. And that was what really just made that recruitment class very intimate, very interesting. It was such a great networking resource, but also, it just was another area that I was able to feel at home on a campus and really find, you know, my, my place on campus.
I hear so many people share similar stories from you know, finding your place and having that community of female friendships to to lean on, especially if you're in kind of a male-dominated space.
Yeah, and I came from, it was a bit of a culture shock, because I came from an all girl high school.
So into a business that was more, or going into a major that was more male, populated, you know, finding, you know, a mentor, who was just exactly who I wanted to be when I grew up, like, I just loved everything about, you know, how they presented themselves and what they were able to accomplish on campus that I just felt that they really exemplified so many of Alpha Sigma Alpha's values, and I felt that they really practiced what they preached.
Awesome. So I know you told me before we hit record that you work for a nonprofit, doing some fundraising. But before we get to that, because I believe that your story is probably what led you into that profession. Why don't you tell everyone a little bit about your experience? So some folks may be familiar with you since you know, certainly your story has been in the news as the first woman to have a uterine transplant and carry a baby. So tell us a little bit about that experience.
Sure. Just to clarify, there are two kinds of uterus transplants and I was the first person that in medicine to have the deceased donor transplant, and that process is very different than a living donor transplant. Obviously, a living donor would, you know, one person who's alive would donate their uterus to somebody who is also alive. But for me, and my story, I started following uterus transplants back in 2014. It was right around the time I got married. You know, Sweden was doing the living donor transplant trials. And the reason Sweden was the first country to start looking into these type of scientific advancements for infertile women was that surrogacy is illegal in Sweden.
So they were looking for another avenue to provide a path to parenthood for, you know, couples who have an absolute infertility from a uterine factor. So my husband and I, we just thought that was so interesting. And we were like, that's really cool. We would love to see where that science goes one day. And for me, I was diagnosed when I was 17 with Mayer-Rokitansky-Küster-Hauser syndrome. And...
What is that?
We call it MRKH. And I'll probably refer to it as its initials since thats very a...
Its a mouthful?
It is a mouthful. It's actually named after the four physicians who discovered this condition.
And it's just to put it in an easier mentality is you were born with either a partially formed or not formed at all, uterus.
So you are chromosomally a woman, all your other reproduc... I have type one, all my other reproductive organs are there. So my, you know, ovaries are there, you're able to create embryos, you could still have a biological family, but you would have to go the path of gestational carrier surrogacy if you wanted to do that. So with MRKH, I was in a lot of Facebook groups, you know, of other women all over the world, because it is a condition that happens to one in 4500. So it's rare, but not so rare that you don't get a chance to like come across other people with it. And their experiences, because it is a very different lived experience. As a woman, you know, there's a lot of, you know, focus on womanhood, womanhood looked a lot different for the people in our cage community. And one day, in 2017, someone had posted that Penn Medicine was looking for clinical trial candidates for their deceased donor uterus transplant program. At this point in time, there hadn't been a deceased donor uterus transplant yet, but, you know, coming right outside of the Philadelphia area, and looking at this criteria, and all of the aspects of the candidate that they're looking for I checked every box and I'm like, All right, I'm just going to apply. We'll see how this goes. I mean, what what are the odds? I'm sure, you know, there's tons of women, you know, applying for these types of clinical trials, there's so much success with this Swedish living donor trials. We'll see, we'll see where this goes. So I applied in within three days, they reached back out that they were interested in, you know, us going through their evaluation process. Now that evaluation process was a very rigorous process as it should be. I mean, you're you're kind of embarking on a clinical trial with some major medical surgery. And they want to make sure that they are the right candidate, because it's a lot of work on the patient side. For me, I had you know, hour meetings with every group you would really work with because it's a multidisciplinary team that you're going to be working with. You have your actual surgeons who are going to be performing the transplant.
There's usually a team of two. One who really focuses on transplant surgeries, and the other person focuses on hysterectomy or gynecological surgeries. And they kind of teamed up and, you know, when we had their meeting they talked about a lot of the practice was like going and sitting in on some of the living donor transplants or, you know, working with people who are donating cadavers for science, like practicing transplants on cadavers, things like that. So, you know, we meet with the transplant surgeons, we meet with the fertility, lead of the program, who would be doing you know, the embryo transfer into the transplanted uterus one day, you meet with dieticians because your diet is going to change on a transplant. You meet with the biggest one was meeting with a pharmacist because you're going to be on a regiment of depressants. I was taking, after I had my transplant taking about 37 pills a day. And you know, I had you know charts I had this really great app that would send you a reminder you know, take this pill at this time. Take the --- of the day some of them were like, you know, just taking Tums because the Tums was gonna counteract, like, the heavy steroids that you're taking, you know. So we had about six months of, you know, having these different meetings, these different groups within the transplant trial team, one of the biggest meetings was the psychology meeting, they actually have our psych evaluation just to make sure you're mentally prepared to go into a very, you know, strenuous process, like you're really changing your daily life. And there's a lot to keep track of, and there can be, you know, a lot to be on top of because things can go, not wrong, but there can be concerns when you have transplant and you want to address them quickly. And it's just a lot, being able to navigating the transplant trial process. I really enjoyed it, because you got to meet with so many of these heads of their areas that you're going to be working with very closely after you have a transplant. And it gave us the opportunity to ask a lot of questions, because this isn't something you just decide to do, it's a very heavily informed decision. Because you're going to be getting a major abdominal transplant, there's going to be weeks of recovery. And then there's going to be a high risk pregnancy, you know, attached to that as well. So it was about, you know, six months, you know, meeting all these different teams really talking through all of our concerns. We were assigned to transplant coordinators, so they were really the person we could go to, if we had any questions, and then they kind of navigate finding the answers are maybe getting the group to weigh in on what some of the answers would be. And then you know, a lot of blood tests and then getting listed for a transplant because as I said, this was Penn's first deceased donor transplant. So you're going to be matched with someone at you know, anytime you're going to get a call that you have a match, just like any other deceased donor, you know, organ transplant, you never know when that call is going to come you're on the list. They own all of your criteria that would match with a donor and you're just waiting. So we waited about from the time we applied, we probably waited about 10-11 months before we got the call.
There has to be a bit nerve wracking at times.
It definitely was. I joked because I had a huge event the next day for for work. And I was like, well, it's go time good luck. Like I literally had it standing up and like, All right, well, I'm going to be getting a transplant tomorrow. We were we were actually shocked it happened as fast as it did. You know, some people are waiting on the transplant list much longer. It was a bit of a whirlwind, because we were like, okay, it's go time. And probably from the time we got the call, it was about like a day and a half turnaround of you know, getting prepped for surgery. And then the surgery is about 10 hours long.
And that's just because there's a lot of blood vessels involved. And one of the differences between a living donor transplant and a deceased donor transplant for uterine transplants is that you can take more blood vessels in a deceased donor transplant, which just gives you a higher chance of success with blood flow.
One of the things that they were trying to showcase is that, you know, living donor ones are very successful, we do want to just kind of compare, you know, the deceased donors to living donors and seeing if they're both options for women. Because at this point in time, like other countries had tried deceased donor transplants and they hadn't had success, but there were some really great data from Brazil that was coming out. And then both Penn and Cleveland Clinic were working on deceased donor programs that they felt that would be successful. So we are definitely on the frontlines of this new type of path to parenthood. As I mentioned before, recovery was about six weeks. But after that it was really just going in a lot for bloodwork kind of just seeing making sure there was no organ rejection, making sure it was, you know, working properly. A lot of it is just really kind of maintaining a status quo for about six months before they could start doing embryo transfers.
So like the IVF process, essentially.
So we had actually... to apply you had to have already been through IVF.
So we had already gone through IVF. We did a round in 2016, we had a few embryos. At that time, when we applied they had mentioned, you know, here's our very small datasets of living donors, you know, some people, this is how many embryo transfers we had to do before they were able to get pregnant, my husband and I just opted to do a second round of IVF, while we were in the application process, which was also successful, but you know, was about two weeks of like hormone injection, and, you know, monitoring and extraction. And a lot of times, women with MRKH, sometimes they can have the standard IVF process, and sometimes we have to have an abdominal extraction, I was able to still have a standard IVF extraction, but then I like to point out that there can be some nuances for women with MRKH each with IVF. But our 2016 round and our 2018 round of IVF, were both very successful, we had enough embryos, that we felt comfortable to go into this trial, to try to do some embryo transfers for the pregnancy. Really the six months of the wait time was just seing that, you know, the organ was working, which was definitely a bit of a shell shock for me, because that was definitely something you know, as a teenager, you know, never getting your period. And like not really having that like rite of passage that most of the other women that you know, had. Having that happen when you were 32, was a very different experience.
Different circumstances, it was definitely that was kind of the most interesting part of the wait of that six months between the transplant and the transfer was just kind of having those lived experiences that, you know, so many of my sorority sisters and my girlfriends from high school, went through and talked about that I just didn't really have a frame of reference for
So you got to experience all of that then?
It's definitely different when you're when you're 32 and that's happening. But it was definitely an interesting experience to having not had that before. I could understand a little bit more of some of the nuances from conversations previously. But then it came to time to do the embryo transfer. And I think the hardest wait out of all the waits was the two-week wait between when we did the embryo transfer and finding out if it was successful, which we had the forethought to, you know, record the call just in case it was successful. Because we want to do like see our actual reactions. You know, being a 17-year-old girl and having a doctor sit you down and say you'll never be pregnant. And to have someone call you and tell you that you're pregnant was such a surreal experience.
I can imagine.
For 15 years, I never thought I'd hear those words that I was pregnant, that I was gonna have a baby that I was carrying. There's just no real words to like, put it I just cried. I cried. I cried like, it just didn't seem real. You know, for so long. They told me it was impossible. But
But it wasn't. Science is amazing.
It wasn't. Science is amazing. It finds its way. And you know, while it was a high risk pregnancy, for the most part, it was a pretty easy pregnancy. I really didn't have too many no morning sickness or anything too crazy there. You know, he was a very active baby. So lots of kicking. But, you know, towards the end, I did get preeclampsia. And we knew that that was going to be something that could happen. So we did deliver early. But I think the thing that made that whole part of the experience a little bit better is that it was always kind of like part of the plan. We had plans of action. We knew, you know what the process would be if that were to happen, and you know, it had happened to other people who are living transplants. You know, at the time that I had given birth at Penn, there were two other deceased donor successes as well. So in theory of our actual birth dates, I was the third person in the world to have this type of success. But as I said, the first person and it really everybody was doing it at the same time, which was kind of surreal. And one of the beautiful things about being on a lot of those Facebook groups is I can talk to some of the other women in the other trials who are either living or deceased donor, you know, transplant patient thing where they were with their process and having, you know, some frame of reference for talking to people who are going through a very interesting process at the same time.
Very unique. Yeah. So did you deliver, like, did they do a C-section or deliver naturally?
Yeah. C-section C-section. Yes. And they actually, were able to do with the preeclampsia with the intense regimen of drugs, it was actually what they call it a C section hysterectomy. So they were able to do the birth and remove the transplanted uterus. And then after that point, I didn't have to be on immunosuppressant drugs anymore. I could focus on, you know, getting myself kind of back to a normal status quo. We're able to show that this type of transplant was successful. Most transplant trials right now, and most uterus transplant trials, in general, just want to be able to provide up to two pregnancies. But if you do have things like, you know, preeclampsia or other, you know, high-risk factors, they try not to recommend more than one, just because the likelihood of it being more even more high risk is an option. So a lot of women, they opt for one, some opt for two if they didn't have some of the higher-risk situations. But no one keeps the uterus after a second child. So
That was kind of my question.
Yes. The the whole point of these types of transplants, which is really interesting, is that they are temporary. So for me, you know, I had, you know, a similar regimen that, you know, a kidney or a liver transplant patient would be on if they were also pregnant. But after I had my baby, and not to take any of those immunosuppressant drugs anymore, and have to worry about rejection, and you have to worry about that.
You didn't have to worry about your period?
Yeah, that's all. Yeah, all of that. And I kind of went back to the only medicine I have to take is a baby aspirin once a day. That's it. So it was a very interesting situation. I've had, you know, very intense regimen of medication, you know, being worried about rejection, to then being able to be a mom, and just really having to only focus on my baby, which still to this day seems surreal to say, but...
And your son, right, is two years old.
He's two, two and lots of energy.
Which is good. Now, forgive me if you said this, and I missed it. Did you carry to term or were you? Was he a premature delivery?
Wait, almost most of the pregnancies tend to go a few weeks early, I was even a little earlier than the weeks that they wanted to deliver. So he was premature. So we did have a little bit of a NICU stay. And that does happen. Just because one of the parts of these studies, you know, it's not just that uterus transplants are an option. But there's a lot of additional studies of, you know, what causes preeclampsia? And what that looks like. So there's a lot of research studies into just the idea of pregnancy in general, and how some of the biological changes in pregnancy could maybe be a breakthrough for other areas, for example, you see that in pregnancy, your body just doesn't attack the fetus or try to reject the fetus because it even though it's a foreign thing, your body has a biological change that knows that that's supposed to be there. Well, why does it do that for organ transplants? And can we figure out a way to recreate that biological response so that, you know, people with liver and kidney and heart transplants don't have to constantly be worried about rejection?
I mean, could this be applied to like, some type of assistance for like combatting cancer, like there's so many applicable things that you don't get a chance to study pregnant women to this level, that they're now able to get all this new data from it to not just showing that pregnancies are successful, but really understanding pregnancy and preeclampsia, and the uterus as a whole, to a whole new level.
Yeah, I can imagine. I mean, that is the benefit of clinical trials is there's lots of other things you can study as well, when you're in that process. So you talked about being a high risk pregnancy, did that mean that you could or couldn't work during that time? And I know, that's an unusual question to ask because, you know, lots of women have high-risk pregnancies and may still work through a portion or all of it. But given you had a very unique circumstance was that another factor that they put in place to say, you know, to ensure that you min-minimize whatever risk could come.
Um, you know, for I worked up until I, you know, went into labor. But we did have conversations of what that work looks like, you know, was going to be going to hundreds of persons of events? Probably not. You know, twofold, I was immunocompromised, and I was high risk pregnancy, but there was tons of other work to do that wasn't, you know, being with a bunch of attendees at an event. So I worked up until the day I went into labor. So that was definitely something I was able to do, you know, within reason, you know, trying to find the right way.
And so he was, your son was born two years ago. So that was pre-pandemic starting?
It was pre-pandemic, thankfully. Yeah, we it was very interesting because we went from you know, our our NICU stay to home. He came home, right before Christmas of 2019.
We were able to be home for the holidays, have a little bit of normalcy before pandemic so
Well, and probably for you still coming through that whole immunocompromised that made it probably in some ways a little easier, because you couldn't go anywhere, anyway.
Exactly. Yeah. Coming off of that definitely was nice to have some home time with him and really get that I would definitely say that's the silver lining is more time with him to see him and definitely just have that time to recover too.
Well, that's it just the whole, the whole process is is fascinating now, is that something that was covered through insurance that they contributed to some of that, given that it was an organ transplant?
Um, you definitely had the option to offer insurance pay for it, but because it was a funded clinical trials.
Oh, that's right. Sorry, I should have known that.
No, the only thing that's not covered by the trial before that we had to, you know, work separately on anything that had to do with IVF, which we did on our own, which is what I mentioned. They were they require that to happen before you apply.
Got it. And our last podcast that we did was with another member who has chosen to do that IVF process to freeze her eggs. She's y'know, not in a relationship today not ready to have a baby. But recognizing as she gets older, she wanted to do that. So if anybody's curious about that process, they can listen to the last podcast with Bradley Norwood. As she talked about her experience there. So completely unplanned, but how appropriate to go from that to this one?
Well, I think the one thing that is so beautiful about the infertility community and the fertility community as a whole is that you get to spread awareness of all these processes. And uterus transplants are just a new process and option for women to find a new path to parenthood. And we were so excited that we could be on the forefront for that. To show that it work. Show that our little happy family is, you know, another way that people can find a new path to creating a family and showing that in all different ways.
Absolutely. Well, that's awesome. So tell us a little bit about your, what you do today. Because like I said, In the beginning, you said that this path kind of led you to the work that you're doing professionally. So tell us a little bit more about that.
I have to kind of go back to my Alpha Sigma Alpha roots a little bit and mention that my first position in the sorority was philanthropy chair.
And I honestly just fell in love with nonprofit work. And then working through the Drexel program, we had Co-Op so I was able to find a nonprofit hospital in Philadelphia that was looking for someone to work on their events team and just kind of finding that niche of being able to, you know, utilize a lot of the skills that I learned in the sorority, and also in business school to really apply back to, you know, nonprofit fundraising and event planning, working in that world. There's something to be said about fundraising for clinical trials throughout the hospital, and really seeing, you know, you can take the business side of something and really advance the health side of the world. And just seeing that having an emphasis on being really, you know, showcasing these different diseases and these different clinical trials, I think that's sort of what drew me to wanting to be a participant in a clinical trial. You know, I spend my days a lot of times raising money for research. I believe in what I do. And I believe that, you know, research is important. And if I have a perfect candidate for, you know, furthering a new field of, of science, especially within, you know, community that is looking for new options, I couldn't help but jump at that chance.
So what is the nonprofit you work for now, if you're if you're allowed to share, and what is the the area of focus that they have?
So I work at Jefferson Hospital, Philadelphia. So focuses are all over. I've been there, I've loved being able to be a part of that team.
So you're fundraising for all kinds of different types of science?
Yes. That's the best part.
That is awesome. It is amazing. It still amazes me, and I work in the biotech industry, but just to see what you can discover and the thing, the ways that you can treat existing disease, or in your case, you know, find a new solution for an existing disease is just amazing,
It truly is and that is, you know, something I love about that profession in that world, is being being able to be curious and finding new answers
Yeah, and it takes a lot of money and a long time to get there, which I'm sure you can attest to trying to raise the money side of it, because a lot of there's a lot of failed discoveries, or maybe I should say not positive outcomes before you get to that positive one, no different than when we were in science class, right? And had to keep doing those, those little chemistry studies over and over until we got the right answer.
Exactly. And no, you need patients. So I think that that is thing. That is also important. And I think what drove me to walk the clinical trial pavement is, you know, putting me where I usually ask people to put money.
Yeah, so tell tell folks a little bit about so I'm familiar with how that process works. But if someone's curious or interested in participating in a clinical trial, how do they go about finding them? What does that experience look like? Because maybe there's somebody on here that has an interest in their wants to learn more about how they can, you know, contribute to science.
So I always share this link, it is really easy. It's just the clinicaltrials.gov link, and you can search for whatever clinical area you're looking into. So for me, if I were to type in uterus transplants, I would be able to see all of the different clinical trials all over the world that are recruiting or or maybe stopped recruiting for uterus transplants. And you know, some of their I guess, thesis's for their trial. And to give you an idea of what that trial is looking for. And that's what was shared, as I said, in the Facebook group, for me, some Oh, on the clinical trial page, there's one going to be at Penn and I was like, thats in my backyard,
You didn't have to travel far, which is good, because some people do.
Yeah, there are people who have relocated, who come from all over. And for me, it was a 15 minute ride back into the city. So...
Yeah, I will say living in the Philadelphia area, I think we are very lucky to be you know, by so many large research driven hospitals that can provide that type of research and care.
100% and I just think that a lot of times, we focus on life sustaining care. But I think that something that really drew me to this trial is that it really was life enhancing. You know, it really changed my life. It changed a lot of what I thought my life would look like and it literally created new life. So for me, I think that there's something beautiful to see and focus on not just, you know, curing something, but you know, creating something
Hmm. Which is awesome. Well, Jen, thank you. This has been fascinating to learn your story. And hopefully it is helpful to others who are interested in in clinical trials. And certainly following following your story as well. I think it's like I said, science is amazing. And it's wonderful, you know, people listening don't get to know that we're seeing each other face to face, but getting to see each other and, and see the joy that is on your face as you tell your story, and all the opportunities that it has brought to you and your family. So, so happy for you and your family. And thank you for sharing your story today.
Thank you and I applaud that a lot of this process would not have been possible if I didn't have the support of friends, many of whom were my Alpha Sigma Alpha sorority sisters. You better believe they were in that NICU the second that baby was born, giving him Ladybug items. And you know, really just being true cheerleaders, you know, as it is, it is a heavy process. And I don't think I could have done it without some of the amazing sisters I've gotten to be able to connect with over the years.
Well that's always great to hear as well. Sisterhood is is more than just our four years in college. It is for life and certainly build those connections and friendships over the years. So glad to know that they continue to support you in your journey. So thank you and to our listeners, until next time.