Ethical Dilemmas in Fetal Medicine

Program announcer

Welcome to the Peds Ethics Podcast, where we talk to leaders in pediatric bioethics about a hot topic or current controversy. Here's your host, John Lantos, from the Children's Mercy Bioethics Center in Kansas City.

Dr. John Lantos

Hi, everybody. It's John Lantos from the Children's Mercy Bioethics Center, bringing you another episode of our Pediatric Ethics Podcast series. We're talking today with Dr. Stephen Leleuthner from Medical College of Wisconsin, a neonatologist and expert in fetal health care. Dr. Leutner is a professor of pediatrics at Medical College of Wisconsin and was one of the pioneers in the field of fetal medicine. Could you tell us a little bit about how fetal medicine developed at Medical College of Wisconsin?

Dr. Steven Leuthner

Sure. When I first arrived as a graduating fellow from my neonatology fellowship, I had the experience of doing a few prenatal consults. And when I arrived at Children's, I recognized that there wasn't a good coordination of care between the maternal fetal medicine physicians and the neonatology group in best helping families understand when they had babies with birth defects what was gonna happen to their baby. Things were very spotty in how consults occurred. So in partnering with a maternal fetal medicine physician, we started a process where I would be the person who they would call to help support in consults and then it would be up to me to make help guide whether we wanted pediatric surgery, urology, neurosurgery or other folks to participate in the consultations. One time was talking to my department chair. He got very excited about the idea and he decided he's going to help fund some part of this project and I literally the next day after talking to him got a call from our administrator saying I have a salary slot for a nurse coordinator for my program and so I give a lot of credit to Dr. Kliegman and we hired a nurse and that's how the things began.

Dr. John Lantos

So before this started if there was a situation where diagnosis had been made of a fetal abnormality what would happen all the counseling was done by the obstetrician

Dr. Steven Leuthner

yeah most of the counseling was done by the maternal fetal medicine physician depending on the situation they seem to at times call a pediatric surgeon or somebody for help but they seem to feel i think at the time that they knew enough about things to counsel so i think that this obviously left the families and women with probably some misinformation, not enough information, because obviously the maternal fetal medicine physicians acknowledge that they can't keep up with every fetal birth defect and what's happening in the world of neonatology at that time.

Dr. John Lantos

So what are some of the ethical issues that arise that are unique to fetal medicine, different from obstetrics and different from, say, neonatology, your specialty?

Dr. Steven Leuthner

I think that the The biggest issue obviously is that here we are called in as a pediatrician expert at some level to help engage the family in understanding something that's happening to their baby, their fetus and baby to be. So clearly

Dr. John Lantos

the language is important

Dr. Steven Leuthner

there. Well, it is interesting. Yes. We routinely call them to the parents, their babies, but we need to acknowledge depending on time and gestation, there's a lot of other issues that come up. But that said, you could see where at times there were a potential for difficult decision-making for those, the pregnant woman who is really trying to make a decision as a mother for her baby. yet in a situation she's not officially a mother yet from the process of birth. And then obviously as therapies moved forward in this field, the ethical issue of interventions, and they could be anything simple from steroid injections for helping mature lungs to obviously major surgical endeavors that are now occurring in the field, but has always historically been set up as this maternal-fetal conflict And I think that yes, you can easily set things up that way. But in another way to try to think about it is how do you set it up as here's a mother who loves her baby and is wanting to do what's best for baby, but has to take on risks that no other mother has to, if the baby's already born. And it leads to very interesting discussions and developments of how do we balance those risks.

Dr. John Lantos

Can you think of a case or two maybe from the early days of this center where it suddenly hit you that, wow, this is more ethically complex than things I've done before or raises different ethical issues?

Dr. Steven Leuthner

The cases that come to mind mostly are those where we are dealing with a woman who would have to undergo a pretty serious operative procedure in a baby. who we're not sure we can really help or do anything about. One of the examples that we were trying to be a little innovative in once was we had a baby with a sacrococcygeal teratoma who was developing severe hydrops vitalis, which means they're essentially in congestive heart failure and have fluid everywhere in their body where it shouldn't be. And the baby is dying and at that time we were

Dr. Steven Leuthner

discussing what can we do for this? And as an innovative thought, one of our maternal fetal medicine physicians knew of some interventional radiologists who did embolization of tumors. So we started some discussions and we then had discussed with this mother, what if we tried embolizing this tumor, could we help reverse the hydrops, fatalis? Now there had been attempts in the past with radio frequency ablation of these tumors and it did harm to those babies because it tended to burn. You can't control the spread of the burn or damage being done. So we did make an attempt at this and I just remember really struggling with the maternal-fenal medicine, the surgeon, a pediatric surgeon involved who obviously are the people who deal with the sacrococcygeal teratomas after birth and working with this mother. recognizing as the father, you know, there's the mother-father relationship that is affecting the decision-making, MFM who's excited about this concept. Was this

Dr. John Lantos

going

Dr. Steven Leuthner

to be an

Dr. John Lantos

open procedure

Dr. Steven Leuthner

or laparoscopic? No, it was going to be laparoscopic. We did make an attempt and it took a while. It wasn't nearly as successful as everyone thought. And in the meantime, they also did a peri-umbilical blood transfusion. for that baby because the baby was severely anemic, which is what happens with these tumors causing high drops. People were excited over the next week because the high drops seemed to be resolving a little bit, but it was unclear whether it was from the embolization or whether it was from the transfusion. It became clear a week later when the high drops became worse again. And then of course I watched this mother come back with chorioamnionitis and an infection and us having to now help get her through this, delivering a baby who is now going to die. And so that's a case that is on my mind of one where I see so many different ethical issues that are very intriguing to me about innovation, about pressure from a husband or not, the excitement of doctors to try to help a mother who wants to help.

Dr. John Lantos

At the time,

Dr. Steven Leuthner

this was a

Dr. John Lantos

highly experimental procedure.

Dr. Steven Leuthner

Yes. Had it

Dr. John Lantos

been done?

Dr. Steven Leuthner

No. Other places? This form of embolization had not been done at any other place. In a fetus. In a

Dr. John Lantos

fetus. And how did you explain that to the parents? Did you tell them, you are the first human beings on earth ever to undergo this procedure and we have no idea

Dr. Steven Leuthner

whether it's going to do

Dr. John Lantos

good or harm?

Dr. Steven Leuthner

Yes, we did. In simple words, yes. We talked to the family. We told them that their baby, we knew... with certainty their baby was going to die in utero if we just let nature take its course. The baby was a little bit too early and the thoughts were even delivery would lead to a neonatal death. And so we told this mother, we have people who are skilled at these procedures in different situations, but it's different patient population. It's never been done in this situation. Something similar has been tried and it didn't work, and it caused harm in different ways that we don't anticipate this would. So it was a very complex, multiple conversations over time.

Dr. John Lantos

And did you also anticipate the possibility of the chorioamnionitis and the risk to mom?

Dr. Steven Leuthner

We did talk about infectious risks with any time we're sticking a needle into the womb. So that was known. So

Dr. John Lantos

what did your team take away from this? Did you say, we learned a lot, we'll do it better next time? Or did you say, that was terrible, we're never going to do that again?

Dr. Steven Leuthner

I think that it was an example where I saw some physicians who were struggling to give up the idea and wanting to do perhaps another try on this mother. Another try

Dr. John Lantos

of embolization.

Dr. Steven Leuthner

Yes, or even the radiofrequency ablation. So there was

Dr. John Lantos

disagreement within

Dr. Steven Leuthner

the team. So there was disagreement among the team, and there may have been a little cultural issues involved. So it was a complicated case. The one thing I made sure we did was we had some arrangement with one of our IRB committee to help us make sure we're going to be on the table about if we're trying something new and so we had some discussions with them.

Dr. John Lantos

This was not part of a research protocol.

Dr. Steven Leuthner

But it was not part of a research protocol at the time. There was no protocol at that time.

Dr. John Lantos

So how do you decide now in a similar situation if there's a fetus with problems that are likely lethal and somebody proposes a previously untried, unstudied intervention that may be the only hope. Who gets to decide whether to do that?

Dr. Steven Leuthner

That's an excellent question. That exact situation has not arisen since that time. Really? Yeah, in that sense. It probably has

Dr. John Lantos

in other places.

Dr. Steven Leuthner

It probably has in other places. And I think that the most important thing is that, from what I've learned from it, is we need to all be able to try to listen to each other. We do need some level of oversight and support when there is conflict amongst the care team. So from that perspective, I think that institutional oversight is somehow critical to make sure we're not overstepping boundaries.

Dr. John Lantos

And this field is growing pretty rapidly, isn't it, fetal medicine?

Dr. Steven Leuthner

Yes, it is a growing field. It's continuing to advance with innovative attempts at things. And I think the field is doing much better as far as trying to organize them as research once some level of feasibility is thought to exist.

Dr. John Lantos

Tough to do randomized trials.

Dr. Steven Leuthner

It is, yeah. Most of the research projects are not going to be set up as randomized trials. Most are going to be set up as case series. And with it potentially... If it is a randomized trial, it would have to be a randomized trial of this intervention versus the no intervention to follow along whether there's benefit or not.

Dr. John Lantos

Do you see some advances on the horizon? Do you think we will be curing some things that we now can't cure?

Dr. Steven Leuthner

Well, I think that the areas that I see people researching right now, or at least beginning to move forward with projects, which I have... differing levels of expectations on whether we're going to prove positive or not on are the raft trial, which is the renal amnio agenesis fetal therapy. It's for, uh, babies who have no amniotic fluid, no kidney disease. And we do amnio infusions on them. I'm serially over time in order to try to help the lungs develop, knowing those babies will need dialysis and kidney transplant at some point throughout their life.

Dr. John Lantos

This would be a similar situation where without intervention...

Dr. Steven Leuthner

Without intervention, those babies die because the lungs don't develop and the babies have no chance of survival even with our neonatal treatments. So that's one study that is being put forward and it will be interesting to see if that advances that. The other study that NAFNET, which is the North American Fetal Treatment Network, is doing is collecting data right now and a registry on hydrocephalus trying to and I think that project I really appreciate how systematic this project's being set up because the first step is a repository of data on imaging and looking at neonatal outcome in order to try to pick the patients who might actually have aqueductal stenosis as their cause of hydrocephalus. And at which point then there could be potentially a fetal intervention to try to open up the aqueduct.

Dr. John Lantos

A shunt or

Dr. Steven Leuthner

a dilation? A laser procedure to try to open up the duct. So again, it's being done, I think, in an appropriate systematic way, whether we're able to technically do this or not over time and will be something that we'll see.

Dr. John Lantos

Well, we appreciate all the work you've done so far and admire the creation of this national fetal therapy network and look forward to seeing whether you can solve some of these problems.

Dr. Steven Leuthner

Thank

Dr. John Lantos

you.

Dr. Steven Leuthner

I'm glad to be here.

Dr. John Lantos

Once again, Dr. Steve Leuthner from Medical College of Wisconsin, a neonatologist and one of the pioneers of fetal therapy and fetal medicine. This is the Pediatric Ethics Podcast from Children's Mercy Hospital Bioethics Center in Kansas City, Missouri. I'm John Lantos. Thanks for listening.