November 7, 2023 • 34 mins
Jen Dingle yearned to get pregnant and have children, but there was one problem: she was born without a uterus. So when she was ready to have children she was desperate to find a way to do it. That’s when she learned that a local research hospital was starting up a uterus transplant program – one of the first in the U.S. Jen shares her personal experience and we explore the risks, financial costs and ethical issues of this new combination of organ transplant and reproductive technology.
Show Notes:
In addition to Jen Dingle, this episode features interviews with:
Ruth Farrell, Vice Chair of Research of the OB/GYN and Women’s Health Institute, and Professor at the Center for Bioethics at the Cleveland Clinic
Liza Johanneson, Medical Director of Uterus Transplant, Baylor Scott & White Medical Center
You can learn more about the uterus transplant program at Baylor here. Dr. Farrell co-authored this article reviewing the state of uterus transplantation as of 2021.
To learn more about the ethics issues raised in this episode, visit the Berman Institute’s episode guide.
The Greenwall Foundation seeks to make bioethics integral to decisions in health care, policy, and research. Learn more at greenwall.org.
Disclaimer: The views and opinions of those interviewed for this episode are their own and do not necessarily reflect the views or positions of any entities they represent.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
I was yearning for something so deep that I felt
like it was impossible to get to. I just felt
like I was in kind of like a hole that
I couldn't get out of because I was ready to
start a family and I wanted to be able to
have our own babies.
Speaker 2 (00:20):
In twenty fifteen, Jen Dingle went through a period of
intense depression. She was ready to start a family with
her husband, and she wanted the experience of being pregnant,
but she was grieving the fact that that could never happen.
Speaker 1 (00:34):
Being a mom and having my own kids has always
been a dream, but I knew that it wasn't it
wouldn't be possible for me.
Speaker 2 (00:41):
Jen has a rare congenital disorder called Maya Rokitanski Cousta
Houser syndrome m r K eight for short. She was
born with ovaries but no cervix or uterus. She first
became aware of her diagnosis when she was fourteen, but
Jen says at the time she had trouble wrapping her
head around what it all meant.
Speaker 1 (01:02):
It was sad, but at the same time, being fourteen,
you're not really thinking about carrying.
Speaker 3 (01:08):
Your own child.
Speaker 1 (01:09):
And also, I feel like at that age, you don't
really fully understand how your body works all the way.
And so for me, whenever I got that news, I
actually thought to myself, well, maybe my uterus just hasn't
grown in, and maybe my uterus will just miraculously grow
in by itself. And so at that age, I think
(01:31):
I didn't really realize what it really truly meant for me.
Speaker 2 (01:35):
When Jen got older, I married her husband. They started
looking into their options for how to have a biological child.
A fertility doctor told them that their only option was
to create embryos using in vitro fertilization and then find
a gestational carrier to give birth to the baby, But
the couple wasn't sure they could afford it. Gestational carriers
(01:57):
can be prohibitively expensive. Anyway, it still wasn't what Jen
really wanted. Then one day, the fertility doctor made an
offhand comment that changed the course of Jen's life.
Speaker 1 (02:10):
She said, I remember hearing something about a uterus transplant
happening somewhere overseas, And she said, but I would never
count on that happening here in the States, because it's way,
way too risky.
Speaker 2 (02:22):
But to Jen, a uterus transplant sounded like the perfect
solution to her problem, despite whatever risks her doctor may
have been referring to. When she got home from the appointment,
Jen immediately began searching uterus transplants online. She found the
transplant center that the doctor had mentioned. It was in
the UK, but when she reached out to the center,
(02:43):
she found out that they weren't ready to offer them
to patients. Yet she continued to feel caught in a
dark depression. She opened up to her mom when she
was back home in Dallas, Texas for a visit.
Speaker 1 (02:56):
And I remember sitting down talking with my mom and
just to her, you know, I've just been sad lately.
I want to be able to start a family, but
surrogacy is just way too expensive and I don't know
if it's even going to be possible. And that's when
she's like, you're going to become a mom. I know,
I feel it in my heart. You will become a mom.
(03:17):
And that's nice for her to tell me, but it's
just hard to believe those things when you've been told
that it's like impossible.
Speaker 2 (03:25):
Jen didn't bring up utrius transplants with her mom that day.
It seemed like too much of a distant possibility. But
then a week after that conversation, she got a call
from her mom.
Speaker 1 (03:37):
She's like, you are never going to believe what I've
seen on the news. I'm like what, And she said,
Baylor in Dallas is going to be doing a uterus
transplant trial for ten women like you who were either
born without a uterus or who lost their uterus due
to cancer or something like that. I'm like, I gotta go,
I gotta go. I didn't even let her finish telling
(03:57):
me what all it was about.
Speaker 2 (04:01):
I'm Lauren Aurora Hutchinson. I'm the director of the Idea's
Lab at the Johns Hopkins Berman Institute of Bioethics. On
today's episode Uterus transplants, The first one that resulted in
a healthy baby being born was performed in Sweden in
twenty thirteen. Since then, over one hundred uterous transplants have
(04:22):
taken place, and over a third of those were performed
in the US. Uterus transplants can offer a life changing
opportunity to individuals with certain types of infertility, but they
do come with risk, and they will cost a lot
of money, and there are other ways to build a family.
(04:44):
What are the ethics of performing an organ transplant in
order to have a baby. Is it okay to transplant
organs that aren't life saving? From pushing industries and the
Johns Hopkins Berman Institute of Bioethics, This is playing god.
(05:07):
Jen couldn't believe her luck. Of all the hospitals in
the world that could have been starting up a uterus
transplant program, it was Baylor University Medical Center, practically in
her old backyard. Jen rushed to apply the application, laid
out the risk factors and requirements. After the transplant, recipients
(05:28):
would have to go on immunosuppressants and be extremely careful
not to spend time around someone who was sick, and
the transplant center emphasized that the procedure was not a
guarantee of a pregnancy. The first three times Baylor had
attempted the transplant so far it hadn't worked. All three
uterresses had to be removed because of an insufficient blood flough.
(05:52):
That made Jen a bit nervous, but she was undeterred.
Speaker 1 (05:58):
I felt like this was my chance, Like this is
a once in a lifetime opportunity.
Speaker 2 (06:04):
After a few months of waiting, Jen's application was approved.
After years of dreaming, about carrying her own child. She
felt like she might actually have a shot. Doctors explained
that the first step was to begin the search for
a living donor. The doctors at Baylor told Jen they
had to put out a call for anonymous, altruistic donors,
(06:25):
people who were willing to donate their uterus to a
complete stranger. Jen also asked her family members and friends,
but for various reasons, none of them were in a
position to donate. While she was waiting for the clinic
to identify a compatible donor, Jen and her husband flew
back to Texas to do a round of IVF. They
(06:47):
got five embryos. A month later, the clinic told Jen
they'd found a donor and she was a match. For
privacy reasons, the hospital couldn't share much about the woman,
just that she was from the area and had four
kids herself, but the hospital did allow the two women
to exchange cards through their nurses.
Speaker 1 (07:08):
I felt like I had so much to tell her,
and a pen and a card just wasn't enough. It
was just very selfless for someone a stranger to do
something like that for someone that they don't know, And
I just couldn't think her enough, and her family for
letting her go under the knife or somebody. They have
(07:30):
no blue who they're doing it for.
Speaker 2 (07:33):
The transplant took place just a few weeks later.
Speaker 1 (07:38):
After they woke me up from the surgery. I remember
them rolling me to ICU, and that was whenever I
first opened my eyes, and I just remember laying there
and watching the lights above me as we're walking down
the hallway, and the first thing I said.
Speaker 3 (07:53):
Was do I have a uterus?
Speaker 1 (07:55):
And the nurse who was pushing me look down and
they smiled and they're like, you have a uter And
I just remember feeling so happy and putting my hands
on my stomach.
Speaker 2 (08:05):
The surgery seemed to have gone well, but one month later,
Jen noticed that she was having some spotting. She called
her doctor, who asked her to describe the bleeding.
Speaker 1 (08:16):
And she's like, you know, I think you're starting your
very first period, and I was like, really.
Speaker 2 (08:22):
At age twenty seven, Jen had gotten her period for
the first time. The surgery had worked. Six months after
the transplant, Jen went to the fertility clinic to have
one of her frozen embryos transferred into a new uterus.
Speaker 1 (08:38):
After having the embryo transfer, I just I didn't want
to move. I kind of just wanted to stay in
one spot until we got the word to know if
it had worked.
Speaker 3 (08:48):
I just I was so cautious.
Speaker 2 (08:51):
Nine days later, she went in for testing to see
if the embryo had implanted.
Speaker 3 (08:56):
It had.
Speaker 1 (08:57):
Jen was pregnant, and I just, I can't believe like that.
That's something that I had always dreamed about, and it happened.
It worked.
Speaker 2 (09:10):
Her pregnancy went smoothly, and the experience of carrying a
child was everything Jen had hoped it would be.
Speaker 1 (09:16):
I had an amazing experience being pregnant. I loved being
able to look at my belly grow and feel the
baby move and things like that.
Speaker 2 (09:27):
In February twenty eighteen, more than three years after she
had first started learning about uterus transplants, Jen gave birth
to a healthy daughter, Jea, in a planned C section.
But Jen's story doesn't end there. Two years after she
had her daughter, Jia, in February twenty twenty, Jen gave
birth to a second baby, girl, Jade, That made Jen
(09:50):
the first woman in the US to have two children
with the transplanted uterus. The same day, Jade was born
at the recommendation of her medical team, gens uterus was
surgically removed, but by then it had changed her life forever.
Despite the obvious upsides of uterus transplants, the procedure has
(10:12):
still raised a number of tricky ethical issues. Doctor Ruth
Ferrel is an obgyn and bioethicist who has been at
the forefront of these issues. She's Vice Chair of Research
for the Obgyn and Women's Health Institute. As a Cleveland
clinic where the first ever us uterus transplant happened in
(10:32):
twenty sixteen, Ruth led the ethics discussions leading up to
that successful transplant. She helped to explain why people might
choose a uterus transplant that is invasive and expensive over
other options like adopting or using a gestational carrier.
Speaker 4 (10:51):
There are other approaches to have families, and they are
very important and valid ways to build families. Yet for
some individuals, either because of local legal regulations or cultural
or religious policies or practices, that gestational surrogacy or adoption
are not permitted or accessible, So uterine transplant is another option.
Speaker 2 (11:14):
The prestigious starts with the donated uters becoming available, and
that can happen in two ways.
Speaker 4 (11:21):
One is a living donor model, where individual will make
the choice to have the uters removed and then give
it to another individual who's considering uterine transplant. The other
approach is a deceased donor model.
Speaker 2 (11:34):
There are several ethical issues to consider in the donation process,
regardless of whether it is a living or deceased donor.
Speaker 4 (11:41):
With respect to living donors, we think about what maybe
the factors to deciding to donate their uterus, how do
we ensure those decisions are made voluntarily and using informed consent.
Or an individual who has deceased and as donate their organs,
we also have to think about what they would have
wanted and seeking permission and authorization from their families if
the uterus is used in this way.
Speaker 2 (12:03):
Unlike deceased donors, living donors take some degree of risk
to their health. Like any invasive surgery, there's the potential
for donors to get an infection or lose a lot
of blood, and that also has to be taken into
consideration in an ethical analysis of uterist transplants.
Speaker 4 (12:21):
When you donate your uterus as a living donor, it's
more than just a standard hysterectomy. The reason why is
when you remove the uterus for a transplant reason, you're
trying to also get a lot of the tissue next
to it getting some of the blood vessels because that's
important for having a good connection in the recipient. When
you get more tissue, there can be some injury to
(12:41):
the organs in the pelvis, and that can either lead
to a short term or long term complication.
Speaker 2 (12:46):
Sometimes the donors are family members of the recipient, a
sibling or even a mother That can also raise questions.
Speaker 4 (12:54):
There may be factors such as pressure, coersion, someone's sense
of duty or obligation help a family member or a relative,
So we need to think about those and do as
much as we can ahead of time to ensure that
all parties are informed of what the procedure entails and
to reduce any potential influence of coercion or bias in
(13:15):
that and the centers that are undergoing these studies or
taking on these procedures do a very meticulous job of
informed consent for all members of the group.
Speaker 2 (13:27):
There's a growing demand for this procedure, which allows someone
to carry their own child who would otherwise not be
able to. Right now, uterus transplants are mainly available through
research programs one day when they do become available more widely,
getting one maybe out of reach for most of those
who need or want one. Many people already face limited
(13:51):
access to fertility treatments because few are covered by insurance,
which raises questions of who exactly will be able to
afford this surgery.
Speaker 4 (14:01):
Part of the core of this is identifying that infertility
is a condition, is a disease for which there should
be coverage. Also, how to all play it all depend
upon the country and what kind of insurance they have,
whether it's a or nationalized healthcare system or system like
here in the US, And so there's still many unknowns
about how much this will cost and how will be
(14:22):
paid for. So that's something which is still being studied,
but it's a core part of doing research and you
doing transplant understanding how we can ensure that equity issues
are not perpetuated.
Speaker 2 (14:36):
Coming up, I'll speak with the person who knows more
about uterus transplants than perhaps anyone in the world. She
headed up the team that gave Jen her transplant, and
she was right there in the room when Jen had
her children. She and her colleagues are already at work
on the next surgical breakthrough in uterrous transplants.
Speaker 3 (14:56):
There is no clear, you know, medical reason why transgender
females couldn't undergo a uterus transplant.
Speaker 2 (15:05):
That's after the break Lisa Johannson is a medical director
a uteris transplant at Baylor University Medical Center in Dallas, Texas.
She's been working on utros transplants for fifteen years. It
all started for Lisa when she was a resident in
(15:26):
gynecology and obstetrics in Sweden. One of her professors suggested
she join his lab and make uterus transplants the focus
of her PhD.
Speaker 3 (15:36):
First, I thought he was absolutely insane. I had never
heard about it and it was completely new to me
the concept. But as I kind of learned more about it,
I decided that this was something exciting and we started
them performing the rodent surgeries and then pig models, sheep models,
and then as the last kind of step before we
(15:58):
could do humans, did baboon studies as well. So when
I presented my thesis this was back in twenty twelve,
a couple of months after that we started with the
first human trial of uterus transplant in the world.
Speaker 2 (16:13):
Wow, very pioneering. So could you tell me what your
favorite part of specializing in this area is now.
Speaker 3 (16:21):
My favorite part is that we now actually can sit
down with patients that are they lost their uterus, are
they're born without uters, and we can actually tell them
that there is options for you. You can go through surrogacy,
you can go through adoption, but there's also an option
to actually treat the diagnosis you have and you can
(16:42):
experience gestation and childbirth. And I never thought that we
were going to be able to say that to our patients.
Speaker 2 (16:48):
Wow, that's incredible to have seen that right from the
process of operating on animals and then go through to
be able to tell someone that they could have a
baby in that way. That's amazing. So where were you
then when Jen gave birth?
Speaker 3 (17:02):
I was right there delivering the baby, So I think
all of our team members were in that delivery room,
and you know, just being there for her, for her family,
it's worth it.
Speaker 2 (17:13):
Right there, that must have been a powerful moment. So,
going back to when you got started with uterus transplants,
what types of ethical questions were you and other researchers
considering back then?
Speaker 3 (17:24):
The ethics around this has changed a lot. So in
the beginning when we did this in animals, the ethics
was very much focused on is this doable, this procedure,
is it worth it? Why are we doing it? Because
there are other options we will always get compared with
surrogacy and adoption. But then when we started having offspring
(17:45):
from the animal research and when we started having babies
from the human trials, the ethics kind of changed. We
more came into ethics around who should we do this for,
how should we do this procedure to minimize the risk
for the recipients. Which donors should we use? Is it's
okay to use living donors for this transplant that is
(18:07):
not life necessary and it's only a quality of life enhancing.
So the ethical field has been very interesting to follow,
but it's evolving as we of all the surgical field.
Speaker 2 (18:19):
Yeah, So one thing that surprised me about Gen's story
was that after she had her second baby, her uterus
was removed. Why is this transplant only kept temporarily rather
than leaving it in place.
Speaker 3 (18:31):
At the moment the recipient of uterus will have to
take umnisuppressive medications that goes for all solid organs, and
as of now, these medications if you take them for
many many years, they might have adverse effects on your
kidneys and on other organ systems in the body, So
we try to minimize the time that these healthy individuals
(18:53):
need to be on a minu suppressive treatment. So that's
why we usually say about five six years is enough.
During that time, we give them possibility of having one
to maybe three children, and then we actually take the
utress out.
Speaker 2 (19:08):
Huh. That's interesting because if the uterus can be taken
back after it's fulfilled its purpose, I could see how
a surgeon might feel more ethically comfortable performing that transplant,
which is not about saving a life, if they know
that the side effects are more short term because the
uterus can be removed again. But then how do physicians
(19:30):
weigh their idea of when a surgery is worth it
versus when a patient thinks it's worth it.
Speaker 3 (19:36):
Yeah, so I think you know, as a surgeon, one
of our main tasks is to not inflict harm, not
injure the patients we're dealing with, So it's not up
to me to decide, you know, how much does a
uterus in a person's life, how much quality of life
does that enhance? You know, having a uterress. I can
(19:59):
never say that because that's only up to the person
who wants sat utris and to evaluate how much it
means to them. But for me, I can never make
myself inflict harm on anyone, So I know that immune
suppression will not be in that person's best interest, and
I have to lean towards what can I do to
(20:21):
develop better drugs, what can I do to think outside
of the box to help these patients. But it's a
very very tricky feel because I can understand why that
would be important, but I have responsibility not to inflict
harm on patients as well.
Speaker 2 (20:40):
And could you speak a bit more about how candidates
are evaluated or prioritized, so who's first on the list
for a transplant and how do you assess needs and eligibility.
Speaker 3 (20:51):
So there's a tremendous need for this procedure, so we've
been quite surprised when we look at the numbers. So
we actually did a little study with Baylor and with
Cleveland Clinic and with University of Pennsylvania, which had been
the three centers in the US that was mostly active
in utross transplant in the beginning, and during these five
years or six years that we have been open for
(21:12):
US transplant we have had more than five thousand women
applying for having a utress transplant, and we have only
transplanted thirty nine, so you can imagine how many we
have had to say no to. From the beginning, it's
been first come, first basis. They contact us, we have
a basic kind of health questionnaire first to make sure
(21:33):
that they are healthy, to make sure that they are
right age, and then we have them in for evaluation.
And then after we have cleared these individuals for transplant,
we start looking for an eligible donor for them, and
most cases in the US so far has actually been
living donors.
Speaker 2 (21:51):
And what would happen if a patient had their children
and then they said to you, I feel like this
uterus is part of my body now and I don't
want to have it removed.
Speaker 3 (22:01):
Yeah, So so far, these are highly selected patients that
have been very compliant with the medical team. And we
always say to the patients that we consider them to
be part of the team. So we usually have conversations
with them. If they have a different, you know, opinion
than we do, we try to come to a common ground.
(22:22):
But of course it's going to happen at some point
that the patient is definitely don't want to give up
their uters and the reason for that is that univerus
oppression is not where we want it to be at
the moment. It can potentially damage your life and your
organs if you have it for too long. And we can't,
of course force them to give up their uterus, but
we can try to explain to them why we think
(22:45):
like we do. And usually people come to terms with
that because if they have given births, they also realize
that they need to be there for that child for
the child's lifetime, right, so they do want to be
in good health, and if something is is damaging their
health liking inn suppression potentially can do, they are quite
willing to get rid of that.
Speaker 2 (23:06):
And if someone had their uterus removed because of a
health condition like cancer or fibroids, but they felt that
they needed to have a uterus in order to kind
of feel whole, would they be eligible for a uterus transplant.
Speaker 3 (23:19):
For now, it's only for reproductive purposes, So at the moment,
just to feel whole is it's not just but to
feel whole, it is not a good reason to get
a uterus transplant today.
Speaker 2 (23:33):
And my understanding is that today only cis gender women
have received uterus transplants. Is that correct?
Speaker 3 (23:40):
That is correct as of today?
Speaker 2 (23:42):
And how close would you say that you are to
being able to perform muterus transplants on transgender patients and
intersex patients.
Speaker 3 (23:51):
I know for a fact that there are several teams,
both in the US and in Europe that I was
looking into that possibility, and I think think that we
are very close to at least doing intersex patients and
AIS patients, which is patients with androgen insensitivity syndrome that
biologically have an xy chromosomes. I think we're very close
(24:15):
to doing those, and then transgender females will follow closely behind.
Speaker 2 (24:22):
And just to make sure I understand, because this would
be a big deal. That's also for the purpose of procreation.
Speaker 3 (24:27):
Right, Yes, so in theory it would. We don't know yet.
And the reason I say theory is that it's not
been done yet, but I believe it. Yes, it could
be done.
Speaker 2 (24:36):
That's incredible. So are there any ethical considerations that working
with a new group like this might bring up?
Speaker 1 (24:44):
Now?
Speaker 3 (24:44):
I think when you look at the transgender population, you
know there are lots of different issues when it comes
to transplantation. That we may or may not have overcome yet.
So the things you usually talk about just you know,
there's anatomical differences or hormonal factors that might be different,
there's fertility concerns, but when it comes to medical parts,
(25:04):
there's no clear, you know, medical reason why transgender females
couldn't undergo you just transplant. But it's up to the
traditions and the legal actions we have of the society
to decide whether we should do it just because some
people say, you know, just because we can, maybe we shouldn't.
(25:25):
If you ask me personally, I think that everyone has
the right to reproductive rights and healthcare that includes also transgenders.
So that's kind of my personal standpoint.
Speaker 2 (25:36):
And have you spoken to potential patients who are interested
in looking at this kind of surgery for this feeling
and feeling whole as opposed to procreation.
Speaker 3 (25:48):
Yes, absolutely, we get those requests, I would say at
least weekly and so far. Unfortunately, you know, we have
to advise them that this is not a good option
for them if that's their purpose, But we do get that.
Speaker 2 (26:01):
Could you just talk a little bit more about the
future of uterus transplants and which direction you see things going.
Speaker 3 (26:09):
So I think uterus transplant it's very exciting. I've been
thinking that from the beginning. But I think we're now
at a road cross where, you know, we know that
we can do it, We know that we can do
it safe. We know that there's a huge demand from
patients that wants to go through a uterress transplant, and
we know there's an enormous supply out there with donors
(26:32):
that wants to give their uters away. So the only
thing that's now holding us back is actually the funding,
the economics of it, and there we need help from
decision makers, for policymakers to understand that infertility is this
massive problem that society would be helped. You know, if
(26:52):
we support infertility, the whole society benefits from that.
Speaker 2 (26:58):
That's really interesting, And so would you say, and with
uterus transplants, is not actually a shortage of people willing
to donate their uterus, it's that it's the economics of
the cost of the surgery.
Speaker 3 (27:16):
Absolutely, But there's so many people out there that wants
to donate. And that's one of the things that when
I moved from Sweden over here, I was so surprised
because in Sweden we had these directed donors, which means
that they know their recipient. So the recipient had to
come with their donors. So it was usually the mother
of the recipient or a close relative that wanted to donate.
(27:37):
But here when we opened in Dallas, all of a sudden,
we had all these donors from all over the country
calling in one saying, you know, I want to give
my uterus away. The pregnancy was such an important part
of my life, and I want to give that experience
to someone else. So we have had donors from forty
one different states calling us and wanting to donate. And
(27:57):
they do that on their own cost. You know, they travel.
We can't give them any reimbursement for travel or expenses
like that. So they come, they pay for their own
you know, stay and plane tickets and everything. And they
do this, They give up their uterus to someone they
don't know and they may never meet, just to give
them the experience.
Speaker 2 (28:16):
Wow, that's incredible and that that's really interesting. And so
it shows a kind of difference with something like kidneys,
where there is a long list and it seems like
the determining factor is the shortage of you know, donors.
But then yeah, that's really interesting that they're there and ready.
It's just the money that's really bad.
Speaker 3 (28:36):
I know, it's frustrating.
Speaker 2 (28:39):
What do you think would make that change?
Speaker 3 (28:41):
I think, you know, reproduction in general and together with
uterus transportation is a field that we don't have any
good support for and why that is maybe it is
you know, I would like more women in the decision
making roles. I would like younger women and younger people
(29:05):
up there to take part in the decision making because
I think infertility is a diagnosis that it's considered a disease,
but it's a very it's almost like a stigma more
more than something that we can cure. So there's a
lot of studies out there where you compare different diseases
(29:26):
that people get, and infertility is right up there with
cancer diagnosis in terms of severity for the individual and
the psychological issues that comes with it. So I think
we should really look at infertility for what it is.
It's a disease that we can cure and it needs support.
Speaker 2 (29:47):
When I heard Lisa talk about the lack of support
for infertility, I couldn't help but think of gen Dingle
and the dark hole she felt she couldn't escape. From
before her uterus transplant. She hopes that her experience can
help other people with uterine factor infertility issues.
Speaker 1 (30:04):
Now they can look at my story and they can say,
I have an option. Now you know, I don't have
to go in and out of these dark holes because
now I know that there's options.
Speaker 2 (30:19):
But just how accessible of an option it will be
once uterus transplants become more widely available remains to be seen.
Speaker 3 (30:26):
It's just so expensive.
Speaker 1 (30:28):
It's so expensive to become a mom if you have
to go through loops like that.
Speaker 2 (30:33):
Remember, for Jen, having a gestational carrier had been out
of reach due to its extremely high cost. Her wish
come true was only financially possible because her uterus transplant
was part of a research program and her costs were covered.
As uterus transplants become offering clinics, the cost might be
(30:54):
just as out of reach for people like Jen as
using a gestational carrier, and, like a lot lot of
other types of fertility treatment, many insurance programs might not
cover getting one. Last year, Jen had another.
Speaker 3 (31:10):
Wish come true.
Speaker 2 (31:11):
Her medical team set up a meeting at the hospital
between her and her uterus donor. The two women first
saw each other from across the hospital terrace.
Speaker 1 (31:21):
We kind of just ran up to each other and
gave each other a hug, and we cried, and we
were nervous because there was lots of people around just
watching us. But we were able to kind of just
have our own moment and just love on each other
a little bit and just tell each other how thankful
we were for each other.
Speaker 2 (31:39):
It turns out this whole time, they'd lived in the
same city, just ten minutes apart from each other. These days,
Jen is in good health. She doesn't have any medical
procedures planned at this time, but if there was a
way to do it without putting too much strain on
her body, she says she'd gladly get another uterus transplant.
(32:04):
She'd love to have more kids.
Speaker 1 (32:06):
If I could have another transplant, I would, And I'd
joke with my team about that all the time. If
you guys want to do something new that's never been done,
a transplant after a transplant, here I am.
Speaker 2 (32:23):
Next time on playing God. Lorie strong In's son Henry,
was diagnosed at birth with a rare and often fatal
genetic disease. She was told that Henry's best chance of
surviving past Kindergarten was a transplant of umbilical core blood
from a sibling with a specific genetic profile.
Speaker 5 (32:43):
We got a call from a doctor who said, what
would you do if I told you you could knowingly
get pregnant with a baby who's healthy and a perfect
genetic match to Henry? And I said, yes.
Speaker 2 (33:03):
But is it ethical to create a life in order
to save another? That's next time I'm playing God. Thank
you to all the guests who appeared in this episode,
Jen Dingle, Lisa Johannson and Ruth Ferrell. Playing God is
a co production of Pushkin Industries and the Johns Hopkins
(33:25):
Berman Institute of Bioethics. Emily Bourne is our lead producer.
This episode was also produced by Sophie Crane and Lucy Sullivan.
Our editors are Karen Chakerjee and Kate Parkinson Morgan. The
music and mixing by Echo Mountain Engineering support from Sarah
Bruguerre and Amanda Kaiwang. Show art by Sean Carney, fact
(33:51):
checking by David jar and Arthur Gompertz. Our executive producer
is Justine Lang at the Johns Hopkins Berman in st
You to Bioethics. Our executive producers are Jeffrey Kahan and
Anna Mastriani, working with a mediahood. Funding provided by the
green Wall Foundation. Special thanks to Anne Egold. I'm Laurena
(34:13):
Rora Hutchinson. Come back next week for more Playing God.
Generous support for Playing God is provided by the Greenwall Foundation.
Making bioethics integral to healthcare policy and research. Learn more
(34:35):
at greenwall dot org
I was yearning for something so deep that I felt
like it was impossible to get to. I just felt
like I was in kind of like a hole that
I couldn't get out of because I was ready to
start a family and I wanted to be able to
have our own babies.
Speaker 2 (00:20):
In twenty fifteen, Jen Dingle went through a period of
intense depression. She was ready to start a family with
her husband, and she wanted the experience of being pregnant,
but she was grieving the fact that that could never happen.
Speaker 1 (00:34):
Being a mom and having my own kids has always
been a dream, but I knew that it wasn't it
wouldn't be possible for me.
Speaker 2 (00:41):
Jen has a rare congenital disorder called Maya Rokitanski Cousta
Houser syndrome m r K eight for short. She was
born with ovaries but no cervix or uterus. She first
became aware of her diagnosis when she was fourteen, but
Jen says at the time she had trouble wrapping her
head around what it all meant.
Speaker 1 (01:02):
It was sad, but at the same time, being fourteen,
you're not really thinking about carrying.
Speaker 3 (01:08):
Your own child.
Speaker 1 (01:09):
And also, I feel like at that age, you don't
really fully understand how your body works all the way.
And so for me, whenever I got that news, I
actually thought to myself, well, maybe my uterus just hasn't
grown in, and maybe my uterus will just miraculously grow
in by itself. And so at that age, I think
(01:31):
I didn't really realize what it really truly meant for me.
Speaker 2 (01:35):
When Jen got older, I married her husband. They started
looking into their options for how to have a biological child.
A fertility doctor told them that their only option was
to create embryos using in vitro fertilization and then find
a gestational carrier to give birth to the baby, But
the couple wasn't sure they could afford it. Gestational carriers
(01:57):
can be prohibitively expensive. Anyway, it still wasn't what Jen
really wanted. Then one day, the fertility doctor made an
offhand comment that changed the course of Jen's life.
Speaker 1 (02:10):
She said, I remember hearing something about a uterus transplant
happening somewhere overseas, And she said, but I would never
count on that happening here in the States, because it's way,
way too risky.
Speaker 2 (02:22):
But to Jen, a uterus transplant sounded like the perfect
solution to her problem, despite whatever risks her doctor may
have been referring to. When she got home from the appointment,
Jen immediately began searching uterus transplants online. She found the
transplant center that the doctor had mentioned. It was in
the UK, but when she reached out to the center,
(02:43):
she found out that they weren't ready to offer them
to patients. Yet she continued to feel caught in a
dark depression. She opened up to her mom when she
was back home in Dallas, Texas for a visit.
Speaker 1 (02:56):
And I remember sitting down talking with my mom and
just to her, you know, I've just been sad lately.
I want to be able to start a family, but
surrogacy is just way too expensive and I don't know
if it's even going to be possible. And that's when
she's like, you're going to become a mom. I know,
I feel it in my heart. You will become a mom.
(03:17):
And that's nice for her to tell me, but it's
just hard to believe those things when you've been told
that it's like impossible.
Speaker 2 (03:25):
Jen didn't bring up utrius transplants with her mom that day.
It seemed like too much of a distant possibility. But
then a week after that conversation, she got a call
from her mom.
Speaker 1 (03:37):
She's like, you are never going to believe what I've
seen on the news. I'm like what, And she said,
Baylor in Dallas is going to be doing a uterus
transplant trial for ten women like you who were either
born without a uterus or who lost their uterus due
to cancer or something like that. I'm like, I gotta go,
I gotta go. I didn't even let her finish telling
(03:57):
me what all it was about.
Speaker 2 (04:01):
I'm Lauren Aurora Hutchinson. I'm the director of the Idea's
Lab at the Johns Hopkins Berman Institute of Bioethics. On
today's episode Uterus transplants, The first one that resulted in
a healthy baby being born was performed in Sweden in
twenty thirteen. Since then, over one hundred uterous transplants have
(04:22):
taken place, and over a third of those were performed
in the US. Uterus transplants can offer a life changing
opportunity to individuals with certain types of infertility, but they
do come with risk, and they will cost a lot
of money, and there are other ways to build a family.
(04:44):
What are the ethics of performing an organ transplant in
order to have a baby. Is it okay to transplant
organs that aren't life saving? From pushing industries and the
Johns Hopkins Berman Institute of Bioethics, This is playing god.
(05:07):
Jen couldn't believe her luck. Of all the hospitals in
the world that could have been starting up a uterus
transplant program, it was Baylor University Medical Center, practically in
her old backyard. Jen rushed to apply the application, laid
out the risk factors and requirements. After the transplant, recipients
(05:28):
would have to go on immunosuppressants and be extremely careful
not to spend time around someone who was sick, and
the transplant center emphasized that the procedure was not a
guarantee of a pregnancy. The first three times Baylor had
attempted the transplant so far it hadn't worked. All three
uterresses had to be removed because of an insufficient blood flough.
(05:52):
That made Jen a bit nervous, but she was undeterred.
Speaker 1 (05:58):
I felt like this was my chance, Like this is
a once in a lifetime opportunity.
Speaker 2 (06:04):
After a few months of waiting, Jen's application was approved.
After years of dreaming, about carrying her own child. She
felt like she might actually have a shot. Doctors explained
that the first step was to begin the search for
a living donor. The doctors at Baylor told Jen they
had to put out a call for anonymous, altruistic donors,
(06:25):
people who were willing to donate their uterus to a
complete stranger. Jen also asked her family members and friends,
but for various reasons, none of them were in a
position to donate. While she was waiting for the clinic
to identify a compatible donor, Jen and her husband flew
back to Texas to do a round of IVF. They
(06:47):
got five embryos. A month later, the clinic told Jen
they'd found a donor and she was a match. For
privacy reasons, the hospital couldn't share much about the woman,
just that she was from the area and had four
kids herself, but the hospital did allow the two women
to exchange cards through their nurses.
Speaker 1 (07:08):
I felt like I had so much to tell her,
and a pen and a card just wasn't enough. It
was just very selfless for someone a stranger to do
something like that for someone that they don't know, And
I just couldn't think her enough, and her family for
letting her go under the knife or somebody. They have
(07:30):
no blue who they're doing it for.
Speaker 2 (07:33):
The transplant took place just a few weeks later.
Speaker 1 (07:38):
After they woke me up from the surgery. I remember
them rolling me to ICU, and that was whenever I
first opened my eyes, and I just remember laying there
and watching the lights above me as we're walking down
the hallway, and the first thing I said.
Speaker 3 (07:53):
Was do I have a uterus?
Speaker 1 (07:55):
And the nurse who was pushing me look down and
they smiled and they're like, you have a uter And
I just remember feeling so happy and putting my hands
on my stomach.
Speaker 2 (08:05):
The surgery seemed to have gone well, but one month later,
Jen noticed that she was having some spotting. She called
her doctor, who asked her to describe the bleeding.
Speaker 1 (08:16):
And she's like, you know, I think you're starting your
very first period, and I was like, really.
Speaker 2 (08:22):
At age twenty seven, Jen had gotten her period for
the first time. The surgery had worked. Six months after
the transplant, Jen went to the fertility clinic to have
one of her frozen embryos transferred into a new uterus.
Speaker 1 (08:38):
After having the embryo transfer, I just I didn't want
to move. I kind of just wanted to stay in
one spot until we got the word to know if
it had worked.
Speaker 3 (08:48):
I just I was so cautious.
Speaker 2 (08:51):
Nine days later, she went in for testing to see
if the embryo had implanted.
Speaker 3 (08:56):
It had.
Speaker 1 (08:57):
Jen was pregnant, and I just, I can't believe like that.
That's something that I had always dreamed about, and it happened.
It worked.
Speaker 2 (09:10):
Her pregnancy went smoothly, and the experience of carrying a
child was everything Jen had hoped it would be.
Speaker 1 (09:16):
I had an amazing experience being pregnant. I loved being
able to look at my belly grow and feel the
baby move and things like that.
Speaker 2 (09:27):
In February twenty eighteen, more than three years after she
had first started learning about uterus transplants, Jen gave birth
to a healthy daughter, Jea, in a planned C section.
But Jen's story doesn't end there. Two years after she
had her daughter, Jia, in February twenty twenty, Jen gave
birth to a second baby, girl, Jade, That made Jen
(09:50):
the first woman in the US to have two children
with the transplanted uterus. The same day, Jade was born
at the recommendation of her medical team, gens uterus was
surgically removed, but by then it had changed her life forever.
Despite the obvious upsides of uterus transplants, the procedure has
(10:12):
still raised a number of tricky ethical issues. Doctor Ruth
Ferrel is an obgyn and bioethicist who has been at
the forefront of these issues. She's Vice Chair of Research
for the Obgyn and Women's Health Institute. As a Cleveland
clinic where the first ever us uterus transplant happened in
(10:32):
twenty sixteen, Ruth led the ethics discussions leading up to
that successful transplant. She helped to explain why people might
choose a uterus transplant that is invasive and expensive over
other options like adopting or using a gestational carrier.
Speaker 4 (10:51):
There are other approaches to have families, and they are
very important and valid ways to build families. Yet for
some individuals, either because of local legal regulations or cultural
or religious policies or practices, that gestational surrogacy or adoption
are not permitted or accessible, So uterine transplant is another option.
Speaker 2 (11:14):
The prestigious starts with the donated uters becoming available, and
that can happen in two ways.
Speaker 4 (11:21):
One is a living donor model, where individual will make
the choice to have the uters removed and then give
it to another individual who's considering uterine transplant. The other
approach is a deceased donor model.
Speaker 2 (11:34):
There are several ethical issues to consider in the donation process,
regardless of whether it is a living or deceased donor.
Speaker 4 (11:41):
With respect to living donors, we think about what maybe
the factors to deciding to donate their uterus, how do
we ensure those decisions are made voluntarily and using informed consent.
Or an individual who has deceased and as donate their organs,
we also have to think about what they would have
wanted and seeking permission and authorization from their families if
the uterus is used in this way.
Speaker 2 (12:03):
Unlike deceased donors, living donors take some degree of risk
to their health. Like any invasive surgery, there's the potential
for donors to get an infection or lose a lot
of blood, and that also has to be taken into
consideration in an ethical analysis of uterist transplants.
Speaker 4 (12:21):
When you donate your uterus as a living donor, it's
more than just a standard hysterectomy. The reason why is
when you remove the uterus for a transplant reason, you're
trying to also get a lot of the tissue next
to it getting some of the blood vessels because that's
important for having a good connection in the recipient. When
you get more tissue, there can be some injury to
(12:41):
the organs in the pelvis, and that can either lead
to a short term or long term complication.
Speaker 2 (12:46):
Sometimes the donors are family members of the recipient, a
sibling or even a mother That can also raise questions.
Speaker 4 (12:54):
There may be factors such as pressure, coersion, someone's sense
of duty or obligation help a family member or a relative,
So we need to think about those and do as
much as we can ahead of time to ensure that
all parties are informed of what the procedure entails and
to reduce any potential influence of coercion or bias in
(13:15):
that and the centers that are undergoing these studies or
taking on these procedures do a very meticulous job of
informed consent for all members of the group.
Speaker 2 (13:27):
There's a growing demand for this procedure, which allows someone
to carry their own child who would otherwise not be
able to. Right now, uterus transplants are mainly available through
research programs one day when they do become available more widely,
getting one maybe out of reach for most of those
who need or want one. Many people already face limited
(13:51):
access to fertility treatments because few are covered by insurance,
which raises questions of who exactly will be able to
afford this surgery.
Speaker 4 (14:01):
Part of the core of this is identifying that infertility
is a condition, is a disease for which there should
be coverage. Also, how to all play it all depend
upon the country and what kind of insurance they have,
whether it's a or nationalized healthcare system or system like
here in the US, And so there's still many unknowns
about how much this will cost and how will be
(14:22):
paid for. So that's something which is still being studied,
but it's a core part of doing research and you
doing transplant understanding how we can ensure that equity issues
are not perpetuated.
Speaker 2 (14:36):
Coming up, I'll speak with the person who knows more
about uterus transplants than perhaps anyone in the world. She
headed up the team that gave Jen her transplant, and
she was right there in the room when Jen had
her children. She and her colleagues are already at work
on the next surgical breakthrough in uterrous transplants.
Speaker 3 (14:56):
There is no clear, you know, medical reason why transgender
females couldn't undergo a uterus transplant.
Speaker 2 (15:05):
That's after the break Lisa Johannson is a medical director
a uteris transplant at Baylor University Medical Center in Dallas, Texas.
She's been working on utros transplants for fifteen years. It
all started for Lisa when she was a resident in
(15:26):
gynecology and obstetrics in Sweden. One of her professors suggested
she join his lab and make uterus transplants the focus
of her PhD.
Speaker 3 (15:36):
First, I thought he was absolutely insane. I had never
heard about it and it was completely new to me
the concept. But as I kind of learned more about it,
I decided that this was something exciting and we started
them performing the rodent surgeries and then pig models, sheep models,
and then as the last kind of step before we
(15:58):
could do humans, did baboon studies as well. So when
I presented my thesis this was back in twenty twelve,
a couple of months after that we started with the
first human trial of uterus transplant in the world.
Speaker 2 (16:13):
Wow, very pioneering. So could you tell me what your
favorite part of specializing in this area is now.
Speaker 3 (16:21):
My favorite part is that we now actually can sit
down with patients that are they lost their uterus, are
they're born without uters, and we can actually tell them
that there is options for you. You can go through surrogacy,
you can go through adoption, but there's also an option
to actually treat the diagnosis you have and you can
(16:42):
experience gestation and childbirth. And I never thought that we
were going to be able to say that to our patients.
Speaker 2 (16:48):
Wow, that's incredible to have seen that right from the
process of operating on animals and then go through to
be able to tell someone that they could have a
baby in that way. That's amazing. So where were you
then when Jen gave birth?
Speaker 3 (17:02):
I was right there delivering the baby, So I think
all of our team members were in that delivery room,
and you know, just being there for her, for her family,
it's worth it.
Speaker 2 (17:13):
Right there, that must have been a powerful moment. So,
going back to when you got started with uterus transplants,
what types of ethical questions were you and other researchers
considering back then?
Speaker 3 (17:24):
The ethics around this has changed a lot. So in
the beginning when we did this in animals, the ethics
was very much focused on is this doable, this procedure,
is it worth it? Why are we doing it? Because
there are other options we will always get compared with
surrogacy and adoption. But then when we started having offspring
(17:45):
from the animal research and when we started having babies
from the human trials, the ethics kind of changed. We
more came into ethics around who should we do this for,
how should we do this procedure to minimize the risk
for the recipients. Which donors should we use? Is it's
okay to use living donors for this transplant that is
(18:07):
not life necessary and it's only a quality of life enhancing.
So the ethical field has been very interesting to follow,
but it's evolving as we of all the surgical field.
Speaker 2 (18:19):
Yeah, So one thing that surprised me about Gen's story
was that after she had her second baby, her uterus
was removed. Why is this transplant only kept temporarily rather
than leaving it in place.
Speaker 3 (18:31):
At the moment the recipient of uterus will have to
take umnisuppressive medications that goes for all solid organs, and
as of now, these medications if you take them for
many many years, they might have adverse effects on your
kidneys and on other organ systems in the body, So
we try to minimize the time that these healthy individuals
(18:53):
need to be on a minu suppressive treatment. So that's
why we usually say about five six years is enough.
During that time, we give them possibility of having one
to maybe three children, and then we actually take the
utress out.
Speaker 2 (19:08):
Huh. That's interesting because if the uterus can be taken
back after it's fulfilled its purpose, I could see how
a surgeon might feel more ethically comfortable performing that transplant,
which is not about saving a life, if they know
that the side effects are more short term because the
uterus can be removed again. But then how do physicians
(19:30):
weigh their idea of when a surgery is worth it
versus when a patient thinks it's worth it.
Speaker 3 (19:36):
Yeah, so I think you know, as a surgeon, one
of our main tasks is to not inflict harm, not
injure the patients we're dealing with, So it's not up
to me to decide, you know, how much does a
uterus in a person's life, how much quality of life
does that enhance? You know, having a uterress. I can
(19:59):
never say that because that's only up to the person
who wants sat utris and to evaluate how much it
means to them. But for me, I can never make
myself inflict harm on anyone, So I know that immune
suppression will not be in that person's best interest, and
I have to lean towards what can I do to
(20:21):
develop better drugs, what can I do to think outside
of the box to help these patients. But it's a
very very tricky feel because I can understand why that
would be important, but I have responsibility not to inflict
harm on patients as well.
Speaker 2 (20:40):
And could you speak a bit more about how candidates
are evaluated or prioritized, so who's first on the list
for a transplant and how do you assess needs and eligibility.
Speaker 3 (20:51):
So there's a tremendous need for this procedure, so we've
been quite surprised when we look at the numbers. So
we actually did a little study with Baylor and with
Cleveland Clinic and with University of Pennsylvania, which had been
the three centers in the US that was mostly active
in utross transplant in the beginning, and during these five
years or six years that we have been open for
(21:12):
US transplant we have had more than five thousand women
applying for having a utress transplant, and we have only
transplanted thirty nine, so you can imagine how many we
have had to say no to. From the beginning, it's
been first come, first basis. They contact us, we have
a basic kind of health questionnaire first to make sure
(21:33):
that they are healthy, to make sure that they are
right age, and then we have them in for evaluation.
And then after we have cleared these individuals for transplant,
we start looking for an eligible donor for them, and
most cases in the US so far has actually been
living donors.
Speaker 2 (21:51):
And what would happen if a patient had their children
and then they said to you, I feel like this
uterus is part of my body now and I don't
want to have it removed.
Speaker 3 (22:01):
Yeah, So so far, these are highly selected patients that
have been very compliant with the medical team. And we
always say to the patients that we consider them to
be part of the team. So we usually have conversations
with them. If they have a different, you know, opinion
than we do, we try to come to a common ground.
(22:22):
But of course it's going to happen at some point
that the patient is definitely don't want to give up
their uters and the reason for that is that univerus
oppression is not where we want it to be at
the moment. It can potentially damage your life and your
organs if you have it for too long. And we can't,
of course force them to give up their uterus, but
we can try to explain to them why we think
(22:45):
like we do. And usually people come to terms with
that because if they have given births, they also realize
that they need to be there for that child for
the child's lifetime, right, so they do want to be
in good health, and if something is is damaging their
health liking inn suppression potentially can do, they are quite
willing to get rid of that.
Speaker 2 (23:06):
And if someone had their uterus removed because of a
health condition like cancer or fibroids, but they felt that
they needed to have a uterus in order to kind
of feel whole, would they be eligible for a uterus transplant.
Speaker 3 (23:19):
For now, it's only for reproductive purposes, So at the moment,
just to feel whole is it's not just but to
feel whole, it is not a good reason to get
a uterus transplant today.
Speaker 2 (23:33):
And my understanding is that today only cis gender women
have received uterus transplants. Is that correct?
Speaker 3 (23:40):
That is correct as of today?
Speaker 2 (23:42):
And how close would you say that you are to
being able to perform muterus transplants on transgender patients and
intersex patients.
Speaker 3 (23:51):
I know for a fact that there are several teams,
both in the US and in Europe that I was
looking into that possibility, and I think think that we
are very close to at least doing intersex patients and
AIS patients, which is patients with androgen insensitivity syndrome that
biologically have an xy chromosomes. I think we're very close
(24:15):
to doing those, and then transgender females will follow closely behind.
Speaker 2 (24:22):
And just to make sure I understand, because this would
be a big deal. That's also for the purpose of procreation.
Speaker 3 (24:27):
Right, Yes, so in theory it would. We don't know yet.
And the reason I say theory is that it's not
been done yet, but I believe it. Yes, it could
be done.
Speaker 2 (24:36):
That's incredible. So are there any ethical considerations that working
with a new group like this might bring up?
Speaker 1 (24:44):
Now?
Speaker 3 (24:44):
I think when you look at the transgender population, you
know there are lots of different issues when it comes
to transplantation. That we may or may not have overcome yet.
So the things you usually talk about just you know,
there's anatomical differences or hormonal factors that might be different,
there's fertility concerns, but when it comes to medical parts,
(25:04):
there's no clear, you know, medical reason why transgender females
couldn't undergo you just transplant. But it's up to the
traditions and the legal actions we have of the society
to decide whether we should do it just because some
people say, you know, just because we can, maybe we shouldn't.
(25:25):
If you ask me personally, I think that everyone has
the right to reproductive rights and healthcare that includes also transgenders.
So that's kind of my personal standpoint.
Speaker 2 (25:36):
And have you spoken to potential patients who are interested
in looking at this kind of surgery for this feeling
and feeling whole as opposed to procreation.
Speaker 3 (25:48):
Yes, absolutely, we get those requests, I would say at
least weekly and so far. Unfortunately, you know, we have
to advise them that this is not a good option
for them if that's their purpose, But we do get that.
Speaker 2 (26:01):
Could you just talk a little bit more about the
future of uterus transplants and which direction you see things going.
Speaker 3 (26:09):
So I think uterus transplant it's very exciting. I've been
thinking that from the beginning. But I think we're now
at a road cross where, you know, we know that
we can do it, We know that we can do
it safe. We know that there's a huge demand from
patients that wants to go through a uterress transplant, and
we know there's an enormous supply out there with donors
(26:32):
that wants to give their uters away. So the only
thing that's now holding us back is actually the funding,
the economics of it, and there we need help from
decision makers, for policymakers to understand that infertility is this
massive problem that society would be helped. You know, if
(26:52):
we support infertility, the whole society benefits from that.
Speaker 2 (26:58):
That's really interesting, And so would you say, and with
uterus transplants, is not actually a shortage of people willing
to donate their uterus, it's that it's the economics of
the cost of the surgery.
Speaker 3 (27:16):
Absolutely, But there's so many people out there that wants
to donate. And that's one of the things that when
I moved from Sweden over here, I was so surprised
because in Sweden we had these directed donors, which means
that they know their recipient. So the recipient had to
come with their donors. So it was usually the mother
of the recipient or a close relative that wanted to donate.
(27:37):
But here when we opened in Dallas, all of a sudden,
we had all these donors from all over the country
calling in one saying, you know, I want to give
my uterus away. The pregnancy was such an important part
of my life, and I want to give that experience
to someone else. So we have had donors from forty
one different states calling us and wanting to donate. And
(27:57):
they do that on their own cost. You know, they travel.
We can't give them any reimbursement for travel or expenses
like that. So they come, they pay for their own
you know, stay and plane tickets and everything. And they
do this, They give up their uterus to someone they
don't know and they may never meet, just to give
them the experience.
Speaker 2 (28:16):
Wow, that's incredible and that that's really interesting. And so
it shows a kind of difference with something like kidneys,
where there is a long list and it seems like
the determining factor is the shortage of you know, donors.
But then yeah, that's really interesting that they're there and ready.
It's just the money that's really bad.
Speaker 3 (28:36):
I know, it's frustrating.
Speaker 2 (28:39):
What do you think would make that change?
Speaker 3 (28:41):
I think, you know, reproduction in general and together with
uterus transportation is a field that we don't have any
good support for and why that is maybe it is
you know, I would like more women in the decision
making roles. I would like younger women and younger people
(29:05):
up there to take part in the decision making because
I think infertility is a diagnosis that it's considered a disease,
but it's a very it's almost like a stigma more
more than something that we can cure. So there's a
lot of studies out there where you compare different diseases
(29:26):
that people get, and infertility is right up there with
cancer diagnosis in terms of severity for the individual and
the psychological issues that comes with it. So I think
we should really look at infertility for what it is.
It's a disease that we can cure and it needs support.
Speaker 2 (29:47):
When I heard Lisa talk about the lack of support
for infertility, I couldn't help but think of gen Dingle
and the dark hole she felt she couldn't escape. From
before her uterus transplant. She hopes that her experience can
help other people with uterine factor infertility issues.
Speaker 1 (30:04):
Now they can look at my story and they can say,
I have an option. Now you know, I don't have
to go in and out of these dark holes because
now I know that there's options.
Speaker 2 (30:19):
But just how accessible of an option it will be
once uterus transplants become more widely available remains to be seen.
Speaker 3 (30:26):
It's just so expensive.
Speaker 1 (30:28):
It's so expensive to become a mom if you have
to go through loops like that.
Speaker 2 (30:33):
Remember, for Jen, having a gestational carrier had been out
of reach due to its extremely high cost. Her wish
come true was only financially possible because her uterus transplant
was part of a research program and her costs were covered.
As uterus transplants become offering clinics, the cost might be
(30:54):
just as out of reach for people like Jen as
using a gestational carrier, and, like a lot lot of
other types of fertility treatment, many insurance programs might not
cover getting one. Last year, Jen had another.
Speaker 3 (31:10):
Wish come true.
Speaker 2 (31:11):
Her medical team set up a meeting at the hospital
between her and her uterus donor. The two women first
saw each other from across the hospital terrace.
Speaker 1 (31:21):
We kind of just ran up to each other and
gave each other a hug, and we cried, and we
were nervous because there was lots of people around just
watching us. But we were able to kind of just
have our own moment and just love on each other
a little bit and just tell each other how thankful
we were for each other.
Speaker 2 (31:39):
It turns out this whole time, they'd lived in the
same city, just ten minutes apart from each other. These days,
Jen is in good health. She doesn't have any medical
procedures planned at this time, but if there was a
way to do it without putting too much strain on
her body, she says she'd gladly get another uterus transplant.
(32:04):
She'd love to have more kids.
Speaker 1 (32:06):
If I could have another transplant, I would, And I'd
joke with my team about that all the time. If
you guys want to do something new that's never been done,
a transplant after a transplant, here I am.
Speaker 2 (32:23):
Next time on playing God. Lorie strong In's son Henry,
was diagnosed at birth with a rare and often fatal
genetic disease. She was told that Henry's best chance of
surviving past Kindergarten was a transplant of umbilical core blood
from a sibling with a specific genetic profile.
Speaker 5 (32:43):
We got a call from a doctor who said, what
would you do if I told you you could knowingly
get pregnant with a baby who's healthy and a perfect
genetic match to Henry? And I said, yes.
Speaker 2 (33:03):
But is it ethical to create a life in order
to save another? That's next time I'm playing God. Thank
you to all the guests who appeared in this episode,
Jen Dingle, Lisa Johannson and Ruth Ferrell. Playing God is
a co production of Pushkin Industries and the Johns Hopkins
(33:25):
Berman Institute of Bioethics. Emily Bourne is our lead producer.
This episode was also produced by Sophie Crane and Lucy Sullivan.
Our editors are Karen Chakerjee and Kate Parkinson Morgan. The
music and mixing by Echo Mountain Engineering support from Sarah
Bruguerre and Amanda Kaiwang. Show art by Sean Carney, fact
(33:51):
checking by David jar and Arthur Gompertz. Our executive producer
is Justine Lang at the Johns Hopkins Berman in st
You to Bioethics. Our executive producers are Jeffrey Kahan and
Anna Mastriani, working with a mediahood. Funding provided by the
green Wall Foundation. Special thanks to Anne Egold. I'm Laurena
(34:13):
Rora Hutchinson. Come back next week for more Playing God.
Generous support for Playing God is provided by the Greenwall Foundation.
Making bioethics integral to healthcare policy and research. Learn more
(34:35):
at greenwall dot org
Popular Podcasts
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!