First baby born to U.S. uterus transplant patient raises ethics questions

Beautiful. Pure. Natural. Medicine at its pinnacle.

Those were the words of Dr. Giuliano Testa this week — the principal investigator of a clinical trial with ten women underway at Baylor University Medical Center in Dallas.

He was talking about the birth of a baby boy to a mother who underwent a uterus transplant last year. It's a first in the U.S., but in Sweden, eight babies have been born to mothers with uterus transplants.

Not everyone is celebrating though.

Dr. Testa and his colleague, Dr. Liza Johannesson, who joined the Baylor team from Sweden earlier this year, spoke with All Things Considered host Kelly McEvers about this development. Excerpts of the interview follow, edited for length and clarity. Dr. Johannesson, you've delivered a lot of babies, can you describe what this one was like, watching this baby boy be born in Dallas?

Dr. Johannesson: It doesn't really matter how many babies you've delivered ... This was a very special moment.

Dr. Johannesson, you've been through this in Sweden, we mentioned that eight babies have been born there to mothers with transplants. How complicated a procedure is it?

Dr. Johannesson: Well it's a transplant, and it's a completely new transplant. .... I think we can compare it to a hysterectomy. When it comes to the donor surgery, probably a little bit more complicated than a simple hysterectomy. It takes about five hours. For the recipient, the transplant itself takes about five hours too. ... Then after you have the transplant, you don't have an immediate success. First you have to know the uterus is staying with the recipient, then you have the periods coming, showing it's viable, then you have to implant the embryo, and then finally you have a pregnancy and then you have to wait the nine months before you have a baby. So the actual success is one and a half years down the line. That's very rare in transplants.

We should mention, Dr. Testa, some of the other women who have been involved in this trial have had transplants that were unsuccessful. What lessons did you learn from those?

Dr. Testa: Well we learned a lot of emotional lessons. ... They trusted us for doing something that for them was of extreme value. We were not able to deliver. So that was a big humbling lesson in itself. And then all the scientific information we got, we were able to apply to the woman who came afterwards, and now we are successful. So I really feel for the first ones.

We mention that not everyone is celebrating this. It raises some ethical questions. Is it possible with a procedure that is so experimental, so risky, to get informed consent from women who desperately want to have a baby?

Dr. Testa: I doubt it is possible for lay people to have informed consent about anything we do in medicine, if you ask me. This is even more complicated because we are going into uncharted waters. ... I think that we go through years of studying to understand what we do, and to achieve mastering the things we do. And then we pretend that in ten minutes we can explain something to anybody. ... I don't think it's really possible.

... We try to use the simplest terms we can think about and then we leave it to the autonomy of the patients, in this case not even patients, these women, to make the decisions. I think we really refrain, and it was really important for us, from any pressure of any kind from our side but then of course, the inner pressure of this woman to have a child I think drove the entire process and their decision at the end.

What about the risk for the baby? What possible complications do you have to consider?

Dr. Johannesson: So in that sense, we know a lot. That's maybe the only aspect of this that we actually have a good knowledge of because females have been giving birth after kidney and liver transplants for many many years on immunosuppressive drugs. So we know what the effect of immunosuppressive drugs has on pregnancies, on babies, on recipients. And we know which immunosuppressive drugs you should not take during pregnancy.

Dr. Testa, women and families do have other options to have a baby — adoption, using a surrogate mother. I wonder how you think about that, about committing scarce medical resources to solving a problem that does have other solutions.

Dr. Testa: True, I don't have a very intelligent answer to this question. I just understood through this process that I myself had completely underestimated the wish of any woman that I've met thus far to have their own child. I don't know whether there is a price for it. I have no philosophical discussion to add. I just have to say that it was a humbling discovery and I'm still profoundly touched by it.

Dr. Johannesson: I think it's important to say also that it doesn't exclude surrogacy or adoption. We're just offering this as a complement treatment.

You're adding this to a menu of options. Which raises the cost question: This is not a cheap procedure to go through. Right now as part of a clinical trial, this is being paid for with research funds, I gather. It is not clear that people's insurers are going to pay for this going forward, which means you may perfect this technique and women may desperately want it and may not be able to afford it.

Dr. Testa: That's absolutely true. But this is true for infertility at large in this country. ... Some woman will go to extremes to be able to have this experience. The cost of medical care is at any rate extremely high for anything we do. As I said, I don't know whether this is really an important question, who's going to pay and how. I doubt the insurers will ever pay for something like this.

What is the cost?

Dr. Testa: We are collecting all the data. ... I assume it's going to be a similar cost that we face today for a kidney transplant. ... The ballpark is, I would say around $200,000 to $250,000.

What's next? You have another mother in the trial who is pregnant?

Dr. Johannesson: We do, we have one that's in an advanced stage of pregnancy. So next up is her delivery. Then we have a couple of other women in different stages of the procedure, so we're hoping for a very happy 2018.

All Things Considered host Mary Louise Kelly and senior producer Andrea Hsu contributed to this report. Greta Jochem is an intern on NPR's Science Desk. Copyright 2019 NPR. To see more, visit https://www.npr.org.