Speaker 1: I was yearning for something so deep that I felt
Speaker 1: like it was impossible to get to. I just felt
Speaker 1: like I was in kind of like a hole that
Speaker 1: I couldn't get out of because I was ready to
Speaker 1: start a family and I wanted to be able to
Speaker 1: have our own babies.
Speaker 2: In twenty fifteen, Jen Dingle went through a period of
Speaker 2: intense depression. She was ready to start a family with
Speaker 2: her husband, and she wanted the experience of being pregnant,
Speaker 2: but she was grieving the fact that that could never happen.
Speaker 1: Being a mom and having my own kids has always
Speaker 1: been a dream, but I knew that it wasn't it
Speaker 1: wouldn't be possible for me.
Speaker 2: Jen has a rare congenital disorder called Maya Rokitanski Cousta
Speaker 2: Houser syndrome m r K eight for short. She was
Speaker 2: born with ovaries but no cervix or uterus. She first
Speaker 2: became aware of her diagnosis when she was fourteen, but
Speaker 2: Jen says at the time she had trouble wrapping her
Speaker 2: head around what it all meant.
Speaker 1: It was sad, but at the same time, being fourteen,
Speaker 1: you're not really thinking about carrying.
Speaker 3: Your own child.
Speaker 1: And also, I feel like at that age, you don't
Speaker 1: really fully understand how your body works all the way.
Speaker 1: And so for me, whenever I got that news, I
Speaker 1: actually thought to myself, well, maybe my uterus just hasn't
Speaker 1: grown in, and maybe my uterus will just miraculously grow
Speaker 1: in by itself. And so at that age, I think
Speaker 1: I didn't really realize what it really truly meant for me.
Speaker 2: When Jen got older, I married her husband. They started
Speaker 2: looking into their options for how to have a biological child.
Speaker 2: A fertility doctor told them that their only option was
Speaker 2: to create embryos using in vitro fertilization and then find
Speaker 2: a gestational carrier to give birth to the baby, But
Speaker 2: the couple wasn't sure they could afford it. Gestational carriers
Speaker 2: can be prohibitively expensive. Anyway, it still wasn't what Jen
Speaker 2: really wanted. Then one day, the fertility doctor made an
Speaker 2: offhand comment that changed the course of Jen's life.
Speaker 1: She said, I remember hearing something about a uterus transplant
Speaker 1: happening somewhere overseas, And she said, but I would never
Speaker 1: count on that happening here in the States, because it's way,
Speaker 1: way too risky.
Speaker 2: But to Jen, a uterus transplant sounded like the perfect
Speaker 2: solution to her problem, despite whatever risks her doctor may
Speaker 2: have been referring to. When she got home from the appointment,
Speaker 2: Jen immediately began searching uterus transplants online. She found the
Speaker 2: transplant center that the doctor had mentioned. It was in
Speaker 2: the UK, but when she reached out to the center,
Speaker 2: she found out that they weren't ready to offer them
Speaker 2: to patients. Yet she continued to feel caught in a
Speaker 2: dark depression. She opened up to her mom when she
Speaker 2: was back home in Dallas, Texas for a visit.
Speaker 1: And I remember sitting down talking with my mom and
Speaker 1: just to her, you know, I've just been sad lately.
Speaker 1: I want to be able to start a family, but
Speaker 1: surrogacy is just way too expensive and I don't know
Speaker 1: if it's even going to be possible. And that's when
Speaker 1: she's like, you're going to become a mom. I know,
Speaker 1: I feel it in my heart. You will become a mom.
Speaker 1: And that's nice for her to tell me, but it's
Speaker 1: just hard to believe those things when you've been told
Speaker 1: that it's like impossible.
Speaker 2: Jen didn't bring up utrius transplants with her mom that day.
Speaker 2: It seemed like too much of a distant possibility. But
Speaker 2: then a week after that conversation, she got a call
Speaker 2: from her mom.
Speaker 1: She's like, you are never going to believe what I've
Speaker 1: seen on the news. I'm like what, And she said,
Speaker 1: Baylor in Dallas is going to be doing a uterus
Speaker 1: transplant trial for ten women like you who were either
Speaker 1: born without a uterus or who lost their uterus due
Speaker 1: to cancer or something like that. I'm like, I gotta go,
Speaker 1: I gotta go. I didn't even let her finish telling
Speaker 1: me what all it was about.
Speaker 2: I'm Lauren Aurora Hutchinson. I'm the director of the Idea's
Speaker 2: Lab at the Johns Hopkins Berman Institute of Bioethics. On
Speaker 2: today's episode Uterus transplants, The first one that resulted in
Speaker 2: a healthy baby being born was performed in Sweden in
Speaker 2: twenty thirteen. Since then, over one hundred uterous transplants have
Speaker 2: taken place, and over a third of those were performed
Speaker 2: in the US. Uterus transplants can offer a life changing
Speaker 2: opportunity to individuals with certain types of infertility, but they
Speaker 2: do come with risk, and they will cost a lot
Speaker 2: of money, and there are other ways to build a family.
Speaker 2: What are the ethics of performing an organ transplant in
Speaker 2: order to have a baby. Is it okay to transplant
Speaker 2: organs that aren't life saving? From pushing industries and the
Speaker 2: Johns Hopkins Berman Institute of Bioethics, This is playing god.
Speaker 2: Jen couldn't believe her luck. Of all the hospitals in
Speaker 2: the world that could have been starting up a uterus
Speaker 2: transplant program, it was Baylor University Medical Center, practically in
Speaker 2: her old backyard. Jen rushed to apply the application, laid
Speaker 2: out the risk factors and requirements. After the transplant, recipients
Speaker 2: would have to go on immunosuppressants and be extremely careful
Speaker 2: not to spend time around someone who was sick, and
Speaker 2: the transplant center emphasized that the procedure was not a
Speaker 2: guarantee of a pregnancy. The first three times Baylor had
Speaker 2: attempted the transplant so far it hadn't worked. All three
Speaker 2: uterresses had to be removed because of an insufficient blood flough.
Speaker 2: That made Jen a bit nervous, but she was undeterred.
Speaker 1: I felt like this was my chance, Like this is
Speaker 1: a once in a lifetime opportunity.
Speaker 2: After a few months of waiting, Jen's application was approved.
Speaker 2: After years of dreaming, about carrying her own child. She
Speaker 2: felt like she might actually have a shot. Doctors explained
Speaker 2: that the first step was to begin the search for
Speaker 2: a living donor. The doctors at Baylor told Jen they
Speaker 2: had to put out a call for anonymous, altruistic donors,
Speaker 2: people who were willing to donate their uterus to a
Speaker 2: complete stranger. Jen also asked her family members and friends,
Speaker 2: but for various reasons, none of them were in a
Speaker 2: position to donate. While she was waiting for the clinic
Speaker 2: to identify a compatible donor, Jen and her husband flew
Speaker 2: back to Texas to do a round of IVF. They
Speaker 2: got five embryos. A month later, the clinic told Jen
Speaker 2: they'd found a donor and she was a match. For
Speaker 2: privacy reasons, the hospital couldn't share much about the woman,
Speaker 2: just that she was from the area and had four
Speaker 2: kids herself, but the hospital did allow the two women
Speaker 2: to exchange cards through their nurses.
Speaker 1: I felt like I had so much to tell her,
Speaker 1: and a pen and a card just wasn't enough. It
Speaker 1: was just very selfless for someone a stranger to do
Speaker 1: something like that for someone that they don't know, And
Speaker 1: I just couldn't think her enough, and her family for
Speaker 1: letting her go under the knife or somebody. They have
Speaker 1: no blue who they're doing it for.
Speaker 2: The transplant took place just a few weeks later.
Speaker 1: After they woke me up from the surgery. I remember
Speaker 1: them rolling me to ICU, and that was whenever I
Speaker 1: first opened my eyes, and I just remember laying there
Speaker 1: and watching the lights above me as we're walking down
Speaker 1: the hallway, and the first thing I said.
Speaker 3: Was do I have a uterus?
Speaker 1: And the nurse who was pushing me look down and
Speaker 1: they smiled and they're like, you have a uter And
Speaker 1: I just remember feeling so happy and putting my hands
Speaker 1: on my stomach.
Speaker 2: The surgery seemed to have gone well, but one month later,
Speaker 2: Jen noticed that she was having some spotting. She called
Speaker 2: her doctor, who asked her to describe the bleeding.
Speaker 1: And she's like, you know, I think you're starting your
Speaker 1: very first period, and I was like, really.
Speaker 2: At age twenty seven, Jen had gotten her period for
Speaker 2: the first time. The surgery had worked. Six months after
Speaker 2: the transplant, Jen went to the fertility clinic to have
Speaker 2: one of her frozen embryos transferred into a new uterus.
Speaker 1: After having the embryo transfer, I just I didn't want
Speaker 1: to move. I kind of just wanted to stay in
Speaker 1: one spot until we got the word to know if
Speaker 1: it had worked.
Speaker 3: I just I was so cautious.
Speaker 2: Nine days later, she went in for testing to see
Speaker 2: if the embryo had implanted.
Speaker 3: It had.
Speaker 1: Jen was pregnant, and I just, I can't believe like that.
Speaker 1: That's something that I had always dreamed about, and it happened.
Speaker 1: It worked.
Speaker 2: Her pregnancy went smoothly, and the experience of carrying a
Speaker 2: child was everything Jen had hoped it would be.
Speaker 1: I had an amazing experience being pregnant. I loved being
Speaker 1: able to look at my belly grow and feel the
Speaker 1: baby move and things like that.
Speaker 2: In February twenty eighteen, more than three years after she
Speaker 2: had first started learning about uterus transplants, Jen gave birth
Speaker 2: to a healthy daughter, Jea, in a planned C section.
Speaker 2: But Jen's story doesn't end there. Two years after she
Speaker 2: had her daughter, Jia, in February twenty twenty, Jen gave
Speaker 2: birth to a second baby, girl, Jade, That made Jen
Speaker 2: the first woman in the US to have two children
Speaker 2: with the transplanted uterus. The same day, Jade was born
Speaker 2: at the recommendation of her medical team, gens uterus was
Speaker 2: surgically removed, but by then it had changed her life forever.
Speaker 2: Despite the obvious upsides of uterus transplants, the procedure has
Speaker 2: still raised a number of tricky ethical issues. Doctor Ruth
Speaker 2: Ferrel is an obgyn and bioethicist who has been at
Speaker 2: the forefront of these issues. She's Vice Chair of Research
Speaker 2: for the Obgyn and Women's Health Institute. As a Cleveland
Speaker 2: clinic where the first ever us uterus transplant happened in
Speaker 2: twenty sixteen, Ruth led the ethics discussions leading up to
Speaker 2: that successful transplant. She helped to explain why people might
Speaker 2: choose a uterus transplant that is invasive and expensive over
Speaker 2: other options like adopting or using a gestational carrier.
Speaker 4: There are other approaches to have families, and they are
Speaker 4: very important and valid ways to build families. Yet for
Speaker 4: some individuals, either because of local legal regulations or cultural
Speaker 4: or religious policies or practices, that gestational surrogacy or adoption
Speaker 4: are not permitted or accessible, So uterine transplant is another option.
Speaker 2: The prestigious starts with the donated uters becoming available, and
Speaker 2: that can happen in two ways.
Speaker 4: One is a living donor model, where individual will make
Speaker 4: the choice to have the uters removed and then give
Speaker 4: it to another individual who's considering uterine transplant. The other
Speaker 4: approach is a deceased donor model.
Speaker 2: There are several ethical issues to consider in the donation process,
Speaker 2: regardless of whether it is a living or deceased donor.
Speaker 4: With respect to living donors, we think about what maybe
Speaker 4: the factors to deciding to donate their uterus, how do
Speaker 4: we ensure those decisions are made voluntarily and using informed consent.
Speaker 4: Or an individual who has deceased and as donate their organs,
Speaker 4: we also have to think about what they would have
Speaker 4: wanted and seeking permission and authorization from their families if
Speaker 4: the uterus is used in this way.
Speaker 2: Unlike deceased donors, living donors take some degree of risk
Speaker 2: to their health. Like any invasive surgery, there's the potential
Speaker 2: for donors to get an infection or lose a lot
Speaker 2: of blood, and that also has to be taken into
Speaker 2: consideration in an ethical analysis of uterist transplants.
Speaker 4: When you donate your uterus as a living donor, it's
Speaker 4: more than just a standard hysterectomy. The reason why is
Speaker 4: when you remove the uterus for a transplant reason, you're
Speaker 4: trying to also get a lot of the tissue next
Speaker 4: to it getting some of the blood vessels because that's
Speaker 4: important for having a good connection in the recipient. When
Speaker 4: you get more tissue, there can be some injury to
Speaker 4: the organs in the pelvis, and that can either lead
Speaker 4: to a short term or long term complication.
Speaker 2: Sometimes the donors are family members of the recipient, a
Speaker 2: sibling or even a mother That can also raise questions.
Speaker 4: There may be factors such as pressure, coersion, someone's sense
Speaker 4: of duty or obligation help a family member or a relative,
Speaker 4: So we need to think about those and do as
Speaker 4: much as we can ahead of time to ensure that
Speaker 4: all parties are informed of what the procedure entails and
Speaker 4: to reduce any potential influence of coercion or bias in
Speaker 4: that and the centers that are undergoing these studies or
Speaker 4: taking on these procedures do a very meticulous job of
Speaker 4: informed consent for all members of the group.
Speaker 2: There's a growing demand for this procedure, which allows someone
Speaker 2: to carry their own child who would otherwise not be
Speaker 2: able to. Right now, uterus transplants are mainly available through
Speaker 2: research programs one day when they do become available more widely,
Speaker 2: getting one maybe out of reach for most of those
Speaker 2: who need or want one. Many people already face limited
Speaker 2: access to fertility treatments because few are covered by insurance,
Speaker 2: which raises questions of who exactly will be able to
Speaker 2: afford this surgery.
Speaker 4: Part of the core of this is identifying that infertility
Speaker 4: is a condition, is a disease for which there should
Speaker 4: be coverage. Also, how to all play it all depend
Speaker 4: upon the country and what kind of insurance they have,
Speaker 4: whether it's a or nationalized healthcare system or system like
Speaker 4: here in the US, And so there's still many unknowns
Speaker 4: about how much this will cost and how will be
Speaker 4: paid for. So that's something which is still being studied,
Speaker 4: but it's a core part of doing research and you
Speaker 4: doing transplant understanding how we can ensure that equity issues
Speaker 4: are not perpetuated.
Speaker 2: Coming up, I'll speak with the person who knows more
Speaker 2: about uterus transplants than perhaps anyone in the world. She
Speaker 2: headed up the team that gave Jen her transplant, and
Speaker 2: she was right there in the room when Jen had
Speaker 2: her children. She and her colleagues are already at work
Speaker 2: on the next surgical breakthrough in uterrous transplants.
Speaker 3: There is no clear, you know, medical reason why transgender
Speaker 3: females couldn't undergo a uterus transplant.
Speaker 2: That's after the break Lisa Johannson is a medical director
Speaker 2: a uteris transplant at Baylor University Medical Center in Dallas, Texas.
Speaker 2: She's been working on utros transplants for fifteen years. It
Speaker 2: all started for Lisa when she was a resident in
Speaker 2: gynecology and obstetrics in Sweden. One of her professors suggested
Speaker 2: she join his lab and make uterus transplants the focus
Speaker 2: of her PhD.
Speaker 3: First, I thought he was absolutely insane. I had never
Speaker 3: heard about it and it was completely new to me
Speaker 3: the concept. But as I kind of learned more about it,
Speaker 3: I decided that this was something exciting and we started
Speaker 3: them performing the rodent surgeries and then pig models, sheep models,
Speaker 3: and then as the last kind of step before we
Speaker 3: could do humans, did baboon studies as well. So when
Speaker 3: I presented my thesis this was back in twenty twelve,
Speaker 3: a couple of months after that we started with the
Speaker 3: first human trial of uterus transplant in the world.
Speaker 2: Wow, very pioneering. So could you tell me what your
Speaker 2: favorite part of specializing in this area is now.
Speaker 3: My favorite part is that we now actually can sit
Speaker 3: down with patients that are they lost their uterus, are
Speaker 3: they're born without uters, and we can actually tell them
Speaker 3: that there is options for you. You can go through surrogacy,
Speaker 3: you can go through adoption, but there's also an option
Speaker 3: to actually treat the diagnosis you have and you can
Speaker 3: experience gestation and childbirth. And I never thought that we
Speaker 3: were going to be able to say that to our patients.
Speaker 2: Wow, that's incredible to have seen that right from the
Speaker 2: process of operating on animals and then go through to
Speaker 2: be able to tell someone that they could have a
Speaker 2: baby in that way. That's amazing. So where were you
Speaker 2: then when Jen gave birth?
Speaker 3: I was right there delivering the baby, So I think
Speaker 3: all of our team members were in that delivery room,
Speaker 3: and you know, just being there for her, for her family,
Speaker 3: it's worth it.
Speaker 2: Right there, that must have been a powerful moment. So,
Speaker 2: going back to when you got started with uterus transplants,
Speaker 2: what types of ethical questions were you and other researchers
Speaker 2: considering back then?
Speaker 3: The ethics around this has changed a lot. So in
Speaker 3: the beginning when we did this in animals, the ethics
Speaker 3: was very much focused on is this doable, this procedure,
Speaker 3: is it worth it? Why are we doing it? Because
Speaker 3: there are other options we will always get compared with
Speaker 3: surrogacy and adoption. But then when we started having offspring
Speaker 3: from the animal research and when we started having babies
Speaker 3: from the human trials, the ethics kind of changed. We
Speaker 3: more came into ethics around who should we do this for,
Speaker 3: how should we do this procedure to minimize the risk
Speaker 3: for the recipients. Which donors should we use? Is it's
Speaker 3: okay to use living donors for this transplant that is
Speaker 3: not life necessary and it's only a quality of life enhancing.
Speaker 3: So the ethical field has been very interesting to follow,
Speaker 3: but it's evolving as we of all the surgical field.
Speaker 2: Yeah, So one thing that surprised me about Gen's story
Speaker 2: was that after she had her second baby, her uterus
Speaker 2: was removed. Why is this transplant only kept temporarily rather
Speaker 2: than leaving it in place.
Speaker 3: At the moment the recipient of uterus will have to
Speaker 3: take umnisuppressive medications that goes for all solid organs, and
Speaker 3: as of now, these medications if you take them for
Speaker 3: many many years, they might have adverse effects on your
Speaker 3: kidneys and on other organ systems in the body, So
Speaker 3: we try to minimize the time that these healthy individuals
Speaker 3: need to be on a minu suppressive treatment. So that's
Speaker 3: why we usually say about five six years is enough.
Speaker 3: During that time, we give them possibility of having one
Speaker 3: to maybe three children, and then we actually take the
Speaker 3: utress out.
Speaker 2: Huh. That's interesting because if the uterus can be taken
Speaker 2: back after it's fulfilled its purpose, I could see how
Speaker 2: a surgeon might feel more ethically comfortable performing that transplant,
Speaker 2: which is not about saving a life, if they know
Speaker 2: that the side effects are more short term because the
Speaker 2: uterus can be removed again. But then how do physicians
Speaker 2: weigh their idea of when a surgery is worth it
Speaker 2: versus when a patient thinks it's worth it.
Speaker 3: Yeah, so I think you know, as a surgeon, one
Speaker 3: of our main tasks is to not inflict harm, not
Speaker 3: injure the patients we're dealing with, So it's not up
Speaker 3: to me to decide, you know, how much does a
Speaker 3: uterus in a person's life, how much quality of life
Speaker 3: does that enhance? You know, having a uterress. I can
Speaker 3: never say that because that's only up to the person
Speaker 3: who wants sat utris and to evaluate how much it
Speaker 3: means to them. But for me, I can never make
Speaker 3: myself inflict harm on anyone, So I know that immune
Speaker 3: suppression will not be in that person's best interest, and
Speaker 3: I have to lean towards what can I do to
Speaker 3: develop better drugs, what can I do to think outside
Speaker 3: of the box to help these patients. But it's a
Speaker 3: very very tricky feel because I can understand why that
Speaker 3: would be important, but I have responsibility not to inflict
Speaker 3: harm on patients as well.
Speaker 2: And could you speak a bit more about how candidates
Speaker 2: are evaluated or prioritized, so who's first on the list
Speaker 2: for a transplant and how do you assess needs and eligibility.
Speaker 3: So there's a tremendous need for this procedure, so we've
Speaker 3: been quite surprised when we look at the numbers. So
Speaker 3: we actually did a little study with Baylor and with
Speaker 3: Cleveland Clinic and with University of Pennsylvania, which had been
Speaker 3: the three centers in the US that was mostly active
Speaker 3: in utross transplant in the beginning, and during these five
Speaker 3: years or six years that we have been open for
Speaker 3: US transplant we have had more than five thousand women
Speaker 3: applying for having a utress transplant, and we have only
Speaker 3: transplanted thirty nine, so you can imagine how many we
Speaker 3: have had to say no to. From the beginning, it's
Speaker 3: been first come, first basis. They contact us, we have
Speaker 3: a basic kind of health questionnaire first to make sure
Speaker 3: that they are healthy, to make sure that they are
Speaker 3: right age, and then we have them in for evaluation.
Speaker 3: And then after we have cleared these individuals for transplant,
Speaker 3: we start looking for an eligible donor for them, and
Speaker 3: most cases in the US so far has actually been
Speaker 3: living donors.
Speaker 2: And what would happen if a patient had their children
Speaker 2: and then they said to you, I feel like this
Speaker 2: uterus is part of my body now and I don't
Speaker 2: want to have it removed.
Speaker 3: Yeah, So so far, these are highly selected patients that
Speaker 3: have been very compliant with the medical team. And we
Speaker 3: always say to the patients that we consider them to
Speaker 3: be part of the team. So we usually have conversations
Speaker 3: with them. If they have a different, you know, opinion
Speaker 3: than we do, we try to come to a common ground.
Speaker 3: But of course it's going to happen at some point
Speaker 3: that the patient is definitely don't want to give up
Speaker 3: their uters and the reason for that is that univerus
Speaker 3: oppression is not where we want it to be at
Speaker 3: the moment. It can potentially damage your life and your
Speaker 3: organs if you have it for too long. And we can't,
Speaker 3: of course force them to give up their uterus, but
Speaker 3: we can try to explain to them why we think
Speaker 3: like we do. And usually people come to terms with
Speaker 3: that because if they have given births, they also realize
Speaker 3: that they need to be there for that child for
Speaker 3: the child's lifetime, right, so they do want to be
Speaker 3: in good health, and if something is is damaging their
Speaker 3: health liking inn suppression potentially can do, they are quite
Speaker 3: willing to get rid of that.
Speaker 2: And if someone had their uterus removed because of a
Speaker 2: health condition like cancer or fibroids, but they felt that
Speaker 2: they needed to have a uterus in order to kind
Speaker 2: of feel whole, would they be eligible for a uterus transplant.
Speaker 3: For now, it's only for reproductive purposes, So at the moment,
Speaker 3: just to feel whole is it's not just but to
Speaker 3: feel whole, it is not a good reason to get
Speaker 3: a uterus transplant today.
Speaker 2: And my understanding is that today only cis gender women
Speaker 2: have received uterus transplants. Is that correct?
Speaker 3: That is correct as of today?
Speaker 2: And how close would you say that you are to
Speaker 2: being able to perform muterus transplants on transgender patients and
Speaker 2: intersex patients.
Speaker 3: I know for a fact that there are several teams,
Speaker 3: both in the US and in Europe that I was
Speaker 3: looking into that possibility, and I think think that we
Speaker 3: are very close to at least doing intersex patients and
Speaker 3: AIS patients, which is patients with androgen insensitivity syndrome that
Speaker 3: biologically have an xy chromosomes. I think we're very close
Speaker 3: to doing those, and then transgender females will follow closely behind.
Speaker 2: And just to make sure I understand, because this would
Speaker 2: be a big deal. That's also for the purpose of procreation.
Speaker 3: Right, Yes, so in theory it would. We don't know yet.
Speaker 3: And the reason I say theory is that it's not
Speaker 3: been done yet, but I believe it. Yes, it could
Speaker 3: be done.
Speaker 2: That's incredible. So are there any ethical considerations that working
Speaker 2: with a new group like this might bring up?
Speaker 1: Now?
Speaker 3: I think when you look at the transgender population, you
Speaker 3: know there are lots of different issues when it comes
Speaker 3: to transplantation. That we may or may not have overcome yet.
Speaker 3: So the things you usually talk about just you know,
Speaker 3: there's anatomical differences or hormonal factors that might be different,
Speaker 3: there's fertility concerns, but when it comes to medical parts,
Speaker 3: there's no clear, you know, medical reason why transgender females
Speaker 3: couldn't undergo you just transplant. But it's up to the
Speaker 3: traditions and the legal actions we have of the society
Speaker 3: to decide whether we should do it just because some
Speaker 3: people say, you know, just because we can, maybe we shouldn't.
Speaker 3: If you ask me personally, I think that everyone has
Speaker 3: the right to reproductive rights and healthcare that includes also transgenders.
Speaker 3: So that's kind of my personal standpoint.
Speaker 2: And have you spoken to potential patients who are interested
Speaker 2: in looking at this kind of surgery for this feeling
Speaker 2: and feeling whole as opposed to procreation.
Speaker 3: Yes, absolutely, we get those requests, I would say at
Speaker 3: least weekly and so far. Unfortunately, you know, we have
Speaker 3: to advise them that this is not a good option
Speaker 3: for them if that's their purpose, But we do get that.
Speaker 2: Could you just talk a little bit more about the
Speaker 2: future of uterus transplants and which direction you see things going.
Speaker 3: So I think uterus transplant it's very exciting. I've been
Speaker 3: thinking that from the beginning. But I think we're now
Speaker 3: at a road cross where, you know, we know that
Speaker 3: we can do it, We know that we can do
Speaker 3: it safe. We know that there's a huge demand from
Speaker 3: patients that wants to go through a uterress transplant, and
Speaker 3: we know there's an enormous supply out there with donors
Speaker 3: that wants to give their uters away. So the only
Speaker 3: thing that's now holding us back is actually the funding,
Speaker 3: the economics of it, and there we need help from
Speaker 3: decision makers, for policymakers to understand that infertility is this
Speaker 3: massive problem that society would be helped. You know, if
Speaker 3: we support infertility, the whole society benefits from that.
Speaker 2: That's really interesting, And so would you say, and with
Speaker 2: uterus transplants, is not actually a shortage of people willing
Speaker 2: to donate their uterus, it's that it's the economics of
Speaker 2: the cost of the surgery.
Speaker 3: Absolutely, But there's so many people out there that wants
Speaker 3: to donate. And that's one of the things that when
Speaker 3: I moved from Sweden over here, I was so surprised
Speaker 3: because in Sweden we had these directed donors, which means
Speaker 3: that they know their recipient. So the recipient had to
Speaker 3: come with their donors. So it was usually the mother
Speaker 3: of the recipient or a close relative that wanted to donate.
Speaker 3: But here when we opened in Dallas, all of a sudden,
Speaker 3: we had all these donors from all over the country
Speaker 3: calling in one saying, you know, I want to give
Speaker 3: my uterus away. The pregnancy was such an important part
Speaker 3: of my life, and I want to give that experience
Speaker 3: to someone else. So we have had donors from forty
Speaker 3: one different states calling us and wanting to donate. And
Speaker 3: they do that on their own cost. You know, they travel.
Speaker 3: We can't give them any reimbursement for travel or expenses
Speaker 3: like that. So they come, they pay for their own
Speaker 3: you know, stay and plane tickets and everything. And they
Speaker 3: do this, They give up their uterus to someone they
Speaker 3: don't know and they may never meet, just to give
Speaker 3: them the experience.
Speaker 2: Wow, that's incredible and that that's really interesting. And so
Speaker 2: it shows a kind of difference with something like kidneys,
Speaker 2: where there is a long list and it seems like
Speaker 2: the determining factor is the shortage of you know, donors.
Speaker 2: But then yeah, that's really interesting that they're there and ready.
Speaker 2: It's just the money that's really bad.
Speaker 3: I know, it's frustrating.
Speaker 2: What do you think would make that change?
Speaker 3: I think, you know, reproduction in general and together with
Speaker 3: uterus transportation is a field that we don't have any
Speaker 3: good support for and why that is maybe it is
Speaker 3: you know, I would like more women in the decision
Speaker 3: making roles. I would like younger women and younger people
Speaker 3: up there to take part in the decision making because
Speaker 3: I think infertility is a diagnosis that it's considered a disease,
Speaker 3: but it's a very it's almost like a stigma more
Speaker 3: more than something that we can cure. So there's a
Speaker 3: lot of studies out there where you compare different diseases
Speaker 3: that people get, and infertility is right up there with
Speaker 3: cancer diagnosis in terms of severity for the individual and
Speaker 3: the psychological issues that comes with it. So I think
Speaker 3: we should really look at infertility for what it is.
Speaker 3: It's a disease that we can cure and it needs support.
Speaker 2: When I heard Lisa talk about the lack of support
Speaker 2: for infertility, I couldn't help but think of gen Dingle
Speaker 2: and the dark hole she felt she couldn't escape. From
Speaker 2: before her uterus transplant. She hopes that her experience can
Speaker 2: help other people with uterine factor infertility issues.
Speaker 1: Now they can look at my story and they can say,
Speaker 1: I have an option. Now you know, I don't have
Speaker 1: to go in and out of these dark holes because
Speaker 1: now I know that there's options.
Speaker 2: But just how accessible of an option it will be
Speaker 2: once uterus transplants become more widely available remains to be seen.
Speaker 3: It's just so expensive.
Speaker 1: It's so expensive to become a mom if you have
Speaker 1: to go through loops like that.
Speaker 2: Remember, for Jen, having a gestational carrier had been out
Speaker 2: of reach due to its extremely high cost. Her wish
Speaker 2: come true was only financially possible because her uterus transplant
Speaker 2: was part of a research program and her costs were covered.
Speaker 2: As uterus transplants become offering clinics, the cost might be
Speaker 2: just as out of reach for people like Jen as
Speaker 2: using a gestational carrier, and, like a lot lot of
Speaker 2: other types of fertility treatment, many insurance programs might not
Speaker 2: cover getting one. Last year, Jen had another.
Speaker 3: Wish come true.
Speaker 2: Her medical team set up a meeting at the hospital
Speaker 2: between her and her uterus donor. The two women first
Speaker 2: saw each other from across the hospital terrace.
Speaker 1: We kind of just ran up to each other and
Speaker 1: gave each other a hug, and we cried, and we
Speaker 1: were nervous because there was lots of people around just
Speaker 1: watching us. But we were able to kind of just
Speaker 1: have our own moment and just love on each other
Speaker 1: a little bit and just tell each other how thankful
Speaker 1: we were for each other.
Speaker 2: It turns out this whole time, they'd lived in the
Speaker 2: same city, just ten minutes apart from each other. These days,
Speaker 2: Jen is in good health. She doesn't have any medical
Speaker 2: procedures planned at this time, but if there was a
Speaker 2: way to do it without putting too much strain on
Speaker 2: her body, she says she'd gladly get another uterus transplant.
Speaker 2: She'd love to have more kids.
Speaker 1: If I could have another transplant, I would, And I'd
Speaker 1: joke with my team about that all the time. If
Speaker 1: you guys want to do something new that's never been done,
Speaker 1: a transplant after a transplant, here I am.
Speaker 2: Next time on playing God. Lorie strong In's son Henry,
Speaker 2: was diagnosed at birth with a rare and often fatal
Speaker 2: genetic disease. She was told that Henry's best chance of
Speaker 2: surviving past Kindergarten was a transplant of umbilical core blood
Speaker 2: from a sibling with a specific genetic profile.
Speaker 5: We got a call from a doctor who said, what
Speaker 5: would you do if I told you you could knowingly
Speaker 5: get pregnant with a baby who's healthy and a perfect
Speaker 5: genetic match to Henry? And I said, yes.
Speaker 2: But is it ethical to create a life in order
Speaker 2: to save another? That's next time I'm playing God. Thank
Speaker 2: you to all the guests who appeared in this episode,
Speaker 2: Jen Dingle, Lisa Johannson and Ruth Ferrell. Playing God is
Speaker 2: a co production of Pushkin Industries and the Johns Hopkins
Speaker 2: Berman Institute of Bioethics. Emily Bourne is our lead producer.
Speaker 2: This episode was also produced by Sophie Crane and Lucy Sullivan.
Speaker 2: Our editors are Karen Chakerjee and Kate Parkinson Morgan. The
Speaker 2: music and mixing by Echo Mountain Engineering support from Sarah
Speaker 2: Bruguerre and Amanda Kaiwang. Show art by Sean Carney, fact
Speaker 2: checking by David jar and Arthur Gompertz. Our executive producer
Speaker 2: is Justine Lang at the Johns Hopkins Berman in st
Speaker 2: You to Bioethics. Our executive producers are Jeffrey Kahan and
Speaker 2: Anna Mastriani, working with a mediahood. Funding provided by the
Speaker 2: green Wall Foundation. Special thanks to Anne Egold. I'm Laurena
Speaker 2: Rora Hutchinson. Come back next week for more Playing God.
Speaker 2: Generous support for Playing God is provided by the Greenwall Foundation.
Speaker 2: Making bioethics integral to healthcare policy and research. Learn more
Speaker 2: at greenwall dot org