Molly and Bethany discuss the when and how of intrauterine blood transfusions (IUTs). Bethany, possibly the world record holder for number of IUTs, has had 16 IUTs through her four allo affected pregnancies. IUTs come with their own risks, but in the hand of a trained and experienced doctor they are the most effective way to maintain the health of an anemic baby.
Molly and Bethany discuss the when and how of intrauterine blood transfusions (IUTs). Bethany, possibly the world record holder for number of IUTs, has had 16 IUTs through her four allo affected pregnancies. IUTs come with their own risks, but in the hand of a trained and experienced doctor they are the most effective way to maintain the health of an anemic baby.
Episode themes:
Questions for your MFM discussed in this episode:
Other Tips
Allo Hope Terminology Library https://allohopefoundation.org/library/terminology/
Guests: Dr. Ken Moise https://partnersincare.health/directory/kenneth-moise
Dr. Thomas Travett http://www.georgiaperinatal.com/dr-trevett/
Links mentioned in this episode:
Canada Study on how often alloimmunized women need IUTs: https://onlinelibrary.wiley.com/doi/pdf/10.1111/trf.16061?casa_token=oeYAk0MeFNsAAAAA:LxM4QAUDqnTuadhT6Ya7gZrtZ5pMv1GzwtLdJGxIHOOglSCgdN-GzjhNfMXv7EwklB1q8n9-d4sT5iE
Dr. Moise’s article on UpToDate: https://www.uptodate.com/contents/intrauterine-fetal-transfusion-of-red-cells?search=interueteran%20transfusion&source=search_result&selectedTitle=6~150&usage_type=default&display_rank=6
Leiden retrospective analysis after 1678 IUT procedures: https://obgyn.onlinelibrary.wiley.com/share/MB8MU3HPWYVXSCUMIE7G?target=10.1002/uog.17319
Study on steroids affecting MCA scans: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8411792/
Redheads need more anesthesia: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1362956/
Research for this episode provided by Bethany Weathersby and Molly Sherwood of the Allo Hope Foundation. Find more information at https://allohopefoundation.org.
The Allo Podcast is produced and edited by https://www.mediaclub.co.
Bethany Weathersby:
The information shared on the Allo Podcast is not intended as medical advice. Your medical care decisions should be made in consultation with your physician who is familiar with your specific case.
Molly Sherwood:
Hi, and welcome to the Allo Podcast from the Allo Hope Foundation. I'm Molly Sherwood.
Bethany Weathersby:
And I'm Bethany Weathersby.
Molly Sherwood:
In this episode, we're going to talk about IUTs, Intrauterine Transfusions, not to be confused with plenty of other acronyms related to this disease. But we're going to get into what they are and what to expect from them. Talk about how critical it is to have the right Maternal Fetal Medicine Specialists performing them. And on the note of those Specialists, we're going to be hearing a little bit from Dr. Ken Moise, and Dr. Thomas Trevett, a little bit here and there in this episode, because they have so much experience in performing these procedures.
Molly Sherwood:
They are both doctors who are Maternal Fetal Medicine Specialists, and they're also members of our Medical Advisory Board. And when we were talking to them about this, they gave us such wonderful gems throughout our whole conversations. And we chose some excerpts that to us were really impactful and informative. And some of them are a little bit long, but we just could not bear to cut them any shorter, because every little bit was just super useful and interesting to us. So before we dive in Bethany, do you feel like we're ready to roll today? We have so many notes to get through.
Bethany Weathersby:
Right.
Molly Sherwood:
More than our producer likes.
Bethany Weathersby:
Yeah.
Molly Sherwood:
Because there's so much.
Bethany Weathersby:
I know, that's okay.
Molly Sherwood:
We're going to get ourselves in trouble.
Bethany Weathersby:
It's good. It's good to include all of the juicy details.
Molly Sherwood:
We can't help it, it's just so nuanced and it's too hard to memorize certain bits and pieces. So anyway, maybe we have too many notes.
Bethany Weathersby:
We'll be thorough.
Molly Sherwood:
We'll get through it.
Bethany Weathersby:
All right. So, let's just dive right in. There's a lot to cover.
Molly Sherwood:
Yeah. And you have maybe the Guinness book of world records, four number of IUTs. How many IUTs have you had by the way?
Bethany Weathersby:
I've had 16 over four pregnancies. So, yeah. I think people usually are not crazy enough to just keep having babies once they have needed IUTs. At least not four in a row, so, maybe that's why I have so many.
Molly Sherwood:
I know. I really do think you have the world record, but if anybody else has the world record, I want to meet that lady.
Bethany Weathersby:
Oh man.
Molly Sherwood:
So please let us know if you've had more, because then you might be crazier than Bethany.
Bethany Weathersby:
I bet there's somebody out there.
Molly Sherwood:
I bet there is.
Bethany Weathersby:
Okay. So Molly, do you want to start by giving us the basics?
Molly Sherwood:
Yes. So I will represent the basic perspective here. I have not had an IUT, so, in the absence of experience in having an IUT I just read about them. So I'll just talk about things that I read. But so, the IUT again, is intrauterine transfusion. The whole idea is, a needle is going through the mom's tummy into the baby and giving the baby blood, because this is a situation where your baby has become anemic due to your Alloimmunization and your antibodies attacking your baby's red blood cells.
Molly Sherwood:
And another thing I was wondering that I kind of want to set the stage here with is, how often do women really need IUTs? I kind of wondered, and one thing that's of course always the case with our disease is, every person is different, it's very difficult to know what's going to happen in your situation. But I was trying to look at some publications out there about how often women do end up needing IUTs? And the stuff I found is kind of all over the place. There's one study in Canada, where they observed all their women who had this condition over six years and they had 71 moms whose babies were at risk, and only two of those moms needed IUTs.
Bethany Weathersby:
Wow. That's crazy.
Molly Sherwood:
It's lower than I would've thought. That study actually had an oddly high prevalence of Anti-E, which is known usually to not require intervention in utero. And then there's another study I found that was based in Spain. And this one was over 15 years and they had 194 babies at risk and 45 of them needed IUTs. Those were mostly Anti-D. So that's like, what is that? Like 25%, does that sound more like what you've seen in your experience?
Bethany Weathersby:
Yes, and even with the more aggressive antibodies like CAL or D, the doctors that I have asked have said that the majority of women do not need IUTs. So that's always comforting to know, I think.
Molly Sherwood:
It is comforting. And it's also comforting to know that it's an option though. This is the only true intervention that's available to babies in utero with our condition.
Bethany Weathersby:
Yes. Yes. And I'm so thankful that it is treatable.
Molly Sherwood:
Right, it is. So let me ask you Bethany, when should an IUT happen?
Bethany Weathersby:
Yes. So, like you said earlier, the IUT is to treat the fetal anemia, but how do we know if the baby's anemic enough to need a blood transfusion? And the answer is MCA scans. Those are the MCA Dopplers that measure how quickly the baby's blood is flowing in the brain, and that number helps the doctors know if the baby is anemic or not. And so the MoM from that, that's the result from the MCA scan, usually if it's 1.5 or higher, that signifies that the baby is anemic enough to need a transfusion. Of course, this is totally up to the doctor and every woman, every baby is different, but that cutoff, that 1.5 cutoff is there for that reason, to help them know that the baby does need blood.
Molly Sherwood:
And then one thing that I was reading, there's a really super helpful, it's kind of like a, have you ever heard of UpToDate Bethany? It's like Wikipedia.
Bethany Weathersby:
Yes.
Molly Sherwood:
It's like Wikipedia for doctors. It's a super awesome resource where experts in their field write these just long doctor focused monologues about how to manage diseases. And so, Dr. Moise is the primary author on the UpToDate article for monitoring and treatment for this condition. And so he says the same thing in there of course, about once you are hitting 1.5 MoM, then at the time of the IUT being scheduled, they will do the umbilical cord sampling, which I think Bethany, is that the cordocentesis that people refer to it as cordocentesis?
Bethany Weathersby:
Yes.
Molly Sherwood:
And so, then they will confirm the need to do an IUT if the hemoglobin is two standard deviations below the mean for the baby's age, which is basically just super low. And if you intervene, he says, at this time you'll have a much better outcome than waiting until the development of severe anemia, which the threshold for that is a hemoglobin of seven or lower. So my takeaway is, do not wait for hydrops to transfuse.
Bethany Weathersby:
Yes, absolutely. I think this is something that we see a lot in the women, the patients that we interact with, is the MoM is 1.5 or higher, but the baby otherwise looks totally healthy on ultrasound, on a regular ultrasound. There are no signs of hydrops, there's no fluid accumulating. There's no signs of distress. And so, sometimes doctors are hesitant to go ahead and do that blood transfusion. I'm going to share a clip right here of Dr. Moise talking about the dangers of waiting for hydrops before doing the transfusion.
Dr. Ken Moise:
We have whole data from a long time ago that if a baby starts developing ascites and getting hydropic, it's really sick. And I think the goal is to not wait for a fetus or an unborn child to become ill before you subject it to a transfusion. And we also have data that hydropic babies don't survive transfusions as well as non-hydropic babies. I think the best data I've seen coming out of Leiden is that the instance of hydrops has declined in their country because of the MCA. So why wait till the baby gets sick, when you've got account on the reliability of the MCA? 1.5 is not normal, 1.0 is normal.
Bethany Weathersby:
Okay. So Molly, he mentioned Leiden. What does that mean, coming out of Leiden?
Molly Sherwood:
Oh yeah, so that's in the Netherlands. That's a group that is notorious, actually, for excellent management of this disease. And they've published a lot on it. One cool thing about them, I'll talk more about their stuff later, but the way that their clinical recommendations are set up, any patient who has this condition in the Netherlands goes to them, just by default. It's the only place that treats them, so they get a bunch of practice and they've really had the chance to refine their specialty.
Bethany Weathersby:
Wow.
Molly Sherwood:
So when he talks about Leiden, he's talking about their work.
Bethany Weathersby:
Okay. Okay. So, just to go back to what Dr. Moise said, if you're waiting till the baby has ascites, and that is fluid buildup in the abdomen, which is usually the start of fetal hydrops, then there is a lower survival rate for that procedure. And just looking at my own babies, I've had four with HDFN and the only one who had ascites before the IUT, she did not survive. And the other three, they did the first IUT before there was any sign of fluid buildup, or distress, or anything like that, visible on the regular ultrasound, they based it on the MCA Doppler scan.
Bethany Weathersby:
So yeah, just seeing it in my own life, it's definitely true. So once the IUTs start, they do have to continue at certain intervals until the baby is delivered. The fetal anemia will never just resolve on its own. So once they start the IUTs, they have to continue them. And talking about timing, and when's the earliest an IUT can be done, and the latest, there are limits to that. You're putting a needle into a baby's vein or into the baby, and at earlier gestations they're smaller obviously, and so it's harder. So I would like to share a clip from Dr. Trevett discussing the earliest and latest he does IUTs.
Dr. Thomas Trevett:
The earliest I will do a transfusion or attempt a transfusion again, is probably as early as 15 weeks if it's necessary, because we're looking for it as early as 15 weeks. And so, if we find it, we'll need to treat anemia. And at that time, it is almost impossible to get a needle into an umbilical cord right around 15 weeks, because the umbilical vein is such a small target. So what we find is that actually just giving blood directly into the baby's abdomen through a process called an intraperitoneal transfusion is probably the safest option. And also very effective at trying to get blood into the baby's system.
Dr. Thomas Trevett:
The latest I've done transfusions are probably just around 35 weeks. What I've found is that if I have to do a transfusion after 36 weeks, my concern is that if the transfusion procedure itself causes the need to do an emergency C-section at that time, an emergent delivery, I think the benefit of trying to get blood into the baby versus the risk of prematurity at 36 weeks just doesn't make sense. We know baby's born after 36 weeks, universally do very, very well. So, we tend not to do any sort of transfusions after 36 weeks, excuse me, 35 weeks is probably just about the latest that I would do a transfusion.
Molly Sherwood:
That's super helpful to frame it. And of course, what happens when I listen to these guys, it just takes me down a rabbit hole of more discussion topics that I want to talk about, but I know we're going to talk about intraperitoneal transfusions, and we'll talk more about the timing for the intervals between, and then when you deliver.
Molly Sherwood:
So, we're going to get there. But I want to hear from the IUT queen, will you please, will you just walk us through the procedure? I just want to, I don't know what it is like. I imagine so many women who have this ahead of them, or maybe they're not sure if they have it ahead of them, it's just so nice to know what to expect.
Bethany Weathersby:
Sure. So, yeah, I'll just share the patient perspective. So usually once they get that high MoM, and realize, okay, this baby is anemic, it's go time, they should measure the baby that day on ultrasound and get an estimated weight. And that's important because they use it to calculate the fetal medication dose during the IUT, and also how much donor blood to give the baby. So, they should get babies' weight. And then usually they send the mother to go have her blood drawn and believe it or not, they are checking the mom for antibodies.
Molly Sherwood:
Why would they do that? We have those, we know that.
Bethany Weathersby:
Exactly, right. We know the woman already has antibodies, so why did they check it again? Because she could develop new antibodies, kind of at any time, really, it's possible to develop new antibodies, even though it is pretty rare, I think. Still, but if she does have a new antibody, they will have to match the donor blood that they are bringing in for the baby to her antibody.
Bethany Weathersby:
So, they will be giving the baby antigen negative donor blood during the IUT, and that's so that the blood they give the baby will not be attacked and destroyed by the mother's antibodies, which is really cool. I always felt a little bit safer after IUT started because I knew that at least a portion of my baby's blood was not being destroyed by my antibodies. Donor blood is ordered, and sometimes it takes one to two, maybe even three days to get that donor blood in. I hope it doesn't take three days. But then they tell you to prep for the IUT as if for surgery. And that just means no food or water after midnight, the night before. And then you have a ton of paperwork to sign, they go through all of the terrifying risks. It sounds so scary when they're listing every possible risk and then you have to sign. So, just know that those things almost never actually happen during an IUT.
Bethany Weathersby:
But then you go in for the IUT. Usually it's the next day, or a couple days later. They give you an IV and then they should be doing fluids and medication for the mother before the IUT procedure. I know for me, I always struggle with nausea during my pregnancies. So, they obviously did not want me vomiting when there's a needle precariously-
Molly Sherwood:
Could motherhood be any harder?
Bethany Weathersby:
I know it's terrible.
Molly Sherwood:
It's a perfect picture of, oh, I just couldn't throw up while I was having an invasive procedure with a needle in my stomach.
Bethany Weathersby:
Exactly. No one is allowed to vomit at that moment. So yeah, so they would give me IV medication, they gave me Zofran to try to prevent-
Molly Sherwood:
Oh, I love Zofran.
Bethany Weathersby:
I know, I don't know how I could've survived without it. But the IV Zofran hits way harder than the oral.
Molly Sherwood:
That's the good stuff. [inaudible 00:12:52] Zofran, Bethany has some.
Bethany Weathersby:
The real thing that hits hard with Zofran is the constipation. Ugh. So bad.
Molly Sherwood:
Be ready. It's so true. And then you feel even more nauseous. It's just a vicious cycle.
Bethany Weathersby:
It's such a cycle. I know, ugh man.
Bethany Weathersby:
Anyway, so, you'll have whatever medications you need before the IUT and I know that some doctors do not give the mother any kind of sedative or pain meds through her IV. But in my experience, the IUT went so much better when my doctors did give me an IV sedative and pain medication through the IV.
Bethany Weathersby:
So, I want Dr. Moise to share with us how he takes care of both of his patients, because he has two, during the IUT procedure he's caring for this tiny baby who is unborn and not even visible. And then the mother too, he's caring for both of these patients. And he does such a phenomenal job of taking care of both of them well. And also the medications, I feel like he has them down.
Dr. Ken Moise:
We do two things I think are important. We do give conscious sedation, just to take the edge off, mom's awake, but she's getting, we like Remifentanil, it's a very short acting narcotic, you can turn it off very quickly. And it just kind of helps with the anxiety and the little bit of discomfort she might have. I also use something called Bupivacaine, which I was taught a long time ago by a senior doc that it's better than Lidocaine because it lasts longer for one thing. And secondly, it takes away your pressure sensation at the same time as your pain receptors. So I'm a fan of Bupivacaine.
Dr. Ken Moise:
And then, my wife taught me, when she had a spinal tap once, wait a minute and let it work. Don't just inject it and go for it. So we now do a 30 second countdown. We have to take a breath, we injected the skin and we stop and we tell a story for 30 seconds and I put 30 seconds on the clock and say, let me know when it's time. I've operated with some individuals before we inject it and then stick the needle in. Well, medicine takes time to work. So if we're given it for that reason, let's let it work.
Dr. Ken Moise:
So we inject it and we'll wait about 30 seconds before we put the needle in, the patients usually don't feel it at that point. Sometimes you'll still feel the needle at the uterine level because we can't numb the uterus up itself, but we can numb up all the other tissues. So the patient really shouldn't be uncomfortable, between the Bupivacaine and the Remifentanil, they should be very comfortable during the procedure.
Bethany Weathersby:
I definitely felt as comfortable as possible with a giant needle going through my abdomen. No, you did a great job. So, what about the baby? Do you usually use a paralytic medication for the baby as well?
Dr. Ken Moise:
Yeah, so I think we learned a long time ago that fetal movement can be dangerous actually, particularly, and I've actually seen this where the needle went into the cord through the anterior placenta and the baby hit the needle with its elbow and actually caused the needle to go through the cord.
Bethany Weathersby:
Oh my goodness.
Dr. Ken Moise:
So we know that fetal movement actually doesn't help us. I've actually had a baby grab the needle and pull it inside. Because you can imagine, if you're in a dark room and a sword comes through the ceiling, so then you might want to figure out what that little toy was and pull it down. So when we first get in, we draw a sample of blood and send that to our little machine to get the initial hematocrit. And then we give a little tiny amount of, we use Vecuronium. It's a paralytic agent that's used by anesthesiologist and even used in the nursery sometimes, so it's very safe.
Dr. Ken Moise:
And we give a little Fentanyl with it. So we kind of give the baby a little narcotic. Now the Remifentanil crosses too, but to a small degree. But that little whiff of Fentanyl sedates the baby. And so now we've got a baby that's totally cooperative. It's not moving around, it's not bumping the needle. And I know there's a recent paper, again, from my friends in Leiden that showed a marked reduction in complications by using, routinely used in a paralytic. So I think it should be used all the time, even with an anterior placenta. Some people will say, well, the placenta's anterior and there's not much needle inside. But again, if that baby bumps into that needle in the cord root, it can tear the cord and cause problems. So I think it should be used routinely.
Molly Sherwood:
He loves these guys in Leiden, as do I, they have awesome stuff out there.
Bethany Weathersby:
They do.
Molly Sherwood:
So, I was looking at that study he was talking about, they did a super cool retrospective analysis, which is basically just looking back over the years of the cases that they've had. And they did it over an 18 year period, until 2015.
Bethany Weathersby:
Wow.
Molly Sherwood:
So they had more than 1600 cases of IUTs, not just of women with this.
Bethany Weathersby:
That's amazing.
Molly Sherwood:
Just compare it to the first couple articles I was talking about in the beginning where they did a couple IUTs.
Bethany Weathersby:
Right.
Molly Sherwood:
So, they said consistently that their fetal survival improved after routine use of fetal paralysis, which is what Moise is getting at. So, that's some pretty convincing evidence I would say.
Bethany Weathersby:
Yes, that is so interesting. I do know that some practitioners don't paralyze the baby for IUTs. And oh, that just always makes me nervous.
Molly Sherwood:
Yes, especially when there are some treatment options or preferences related to this disease where it's kind of nuanced, there's not a bunch of literature on it, but this is actually pretty great evidence. So, that's kind of encouraging to know that we can point to that. And I also was going to ask about, I don't know why this popped into my mind now, but steroids. I guess because we're talking about premeds and things like this.
Molly Sherwood:
So, I know you and I see a lot when a woman has an elevated MoM, and their doctor says, okay, let's get ready to do an IUT, I'm going to give you steroids for your baby. Because in any case, when the doctor has reason to believe that the baby could possibly be delivered earlier, they like to give steroids to help give the baby's lungs a little bit of a boost in case they're going to come early. So even Dr. Moise's recommendations are to administer steroids 48 hours in advance. But, there's something weird about that, right? Because I know this has come up with you recently in your advocacy work with other mothers.
Bethany Weathersby:
Yes. And so, Dr. Moise and Dr. Trevett have both said that they have seen steroids artificially lower MoMs, even when the baby is still anemic. Not every time, and there's not a lot of studies on this, actually just this morning, Dr. Moise shared a study on this very thing with me. I think it was out of Australia, but maybe we can link it in the show notes. But it studied this, do steroids actually lower the MoM, and it was a small sample size so I feel like the...
Molly Sherwood:
Classic.
Bethany Weathersby:
Yeah.
Molly Sherwood:
What can you do-
Bethany Weathersby:
I mean, that's right. [inaudible 00:18:52] problem.
Molly Sherwood:
I don't know, this is the best we can do.
Bethany Weathersby:
Exactly.
Bethany Weathersby:
So yeah, rare disease, man. So they just said that there is a possibility of steroids falsely lowering MoMs on an MCA scan. And so that is why Dr. Moise and Dr. Trevett and other experts in the field do not administer steroids until they have already made the decision to do the IUT. Because if you give the steroids and then do a scan after that and it's lower, how do you know if the baby really is not anemic, or if the steroid artificially lowered that number? And then how do you make a treatment decision based on numbers you aren't sure if they're accurate? And that's the trouble, I think.
Bethany Weathersby:
So with me, they always made the decision to do the IUT, and then, I forgot to include this in the walkthrough, sorry. But after that, they'd do the blood work on me and then they would give me the first steroid shot right there. And then the next day when I came in for the IUT, they would give me the second steroid shot before the IUT.
Molly Sherwood:
Oh, that's true. Because I guess you do typically try to squeeze in two steroid shots.
Bethany Weathersby:
Yes.
Molly Sherwood:
And this is true of any high risk pregnancy where we think the baby might come early.
Bethany Weathersby:
Yeah. So we always did, especially with that first earlier IUT, we had the steroids, but not until after they had made the decision to transfuse.
Molly Sherwood:
Yeah. I think that's a critical side note. So, if your doctor decides you're going to go with steroids, you need to have already made the choice that you're going to be having an IUT.
Bethany Weathersby:
Yes.
Molly Sherwood:
Let's jump back into, we just talked about the pre-medication and what happens to prepare you and the baby prior to the IUT. So can you keep talking about now what happens during?
Bethany Weathersby:
Sure. And then really quick, I also just remembered another thing I wanted to add, just from my personal experience. In one of my IUTs, it was with my youngest son, August. It was his first IUT, and for some reason the paralytic for him was not working. I think that maybe Dr. Trevett didn't get it fully in the cord or something. Maybe the baby was bigger than expected and he needed a higher dose, but they were having trouble paralyzing him. And he was so active during the IUT that it made the entire procedure unsuccessful, basically. So it didn't work.
Molly Sherwood:
Wow.
Bethany Weathersby:
They couldn't paralyze him.
Molly Sherwood:
Side note, is he like a savage in real life now too? Is he like crazy?
Bethany Weathersby:
He is, absolutely.
Molly Sherwood:
Because I swear babies have the same behavior in utero as they do later.
Bethany Weathersby:
Yes.
Molly Sherwood:
Like, once I meet them in real life outside of me, I'm like, yes, you acted like this even in my stomach.
Bethany Weathersby:
He was crazy. Yep. Every time we did an MCA scan, they were just like, what? Did you drink some coffee right before you came in? We're having to chase him around your uterus to get the MCA scan.
Molly Sherwood:
So, but now I want to ask you about that. So, did you have to... What happened with that procedure, did you just have to try again later or what happened?
Bethany Weathersby:
Yeah, finally Dr. Trevett said we're going to stop, because it's seeming dangerous and not successful. So they stopped. And then he did an MCA scan after the procedure, and the baby was still anemic. And so we were just like, what do we do? This is crazy. And he went back in, I believe it was, I think it was 24 hours later. So I just stayed in the hospital, stayed the night and the next day he did another attempt, and that time it was successful, baby was very paralyzed. He was-
Molly Sherwood:
He probably just zapped him. Stay there.
Bethany Weathersby:
He did. He really upped the dose, actually. Yeah. So he was still, and then it was successful. So, in my experience, that always helped when the baby was well paralyzed.
Bethany Weathersby:
Most IUTs are performed in an operating room, and I think if your doctor is not doing them in the OR, you should probably ask why.
Molly Sherwood:
So, is the idea just so you're ready in case some complication should happen, that you could deliver the baby?
Bethany Weathersby:
I think that's part of it. It's also a sterile environment and everything is set up. It's bright, it's clean and there's enough space for the whole team. It's not just the doctor in there doing the IUT, it's a huge team of people. Especially if your baby is passed viability, there's a whole NICU team ready and waiting with a little bassinet just in case something goes wrong and they have to deliver. There's a whole team. There's an anesthesiologist and nurses. So yes, I think I had one IUT not in an OR, and I felt incredibly anxious the entire time.
Bethany Weathersby:
Because if the heart rate dropped and they had to deliver, the baby's heart rate, sorry, and they had to deliver, then they would've had to transport me to the OR before... And so just that time lag could be the difference between life or death, at least in my opinion. So, if you're not having it in the OR ask them why. So then you go in and you lay on the table and with me, they would strap my arms down on the side. You really don't want to be moving at all during the procedure. It's very precise, sticking a needle through the mother's abdomen, into the umbilical vein, if you can imagine how tiny that is.
Molly Sherwood:
Gosh.
Bethany Weathersby:
I was happy to have my arms strapped down.
Molly Sherwood:
Yeah, sure. You don't want to be the one to cause any problems.
Bethany Weathersby:
Right.
Molly Sherwood:
Also, does it hurt? I know Dr. Moise talked in that clip, talked about doing a little bit of pain meds and just calming meds, but do you remember it hurting at all?
Bethany Weathersby:
It did, it really hurt. Pain meds don't work as well on me, have you ever heard that redheads metabolize pain medication differently?
Molly Sherwood:
I feel like I have, but maybe that was just from you, but I feel like I've accepted now that this is a thing. So either I knew that or you really convinced me, so.
Bethany Weathersby:
Yeah, well there's actual studies on it, so maybe you could-
Molly Sherwood:
Okay, I should have prepared that.
Bethany Weathersby:
You could find it. At least according to doctors they've told me that there are studies showing that, but so Lidocaine and pain medication in general, they usually have to use a lot more for it to actually work. Dental procedures, I can usually feel the whole thing. It's terrible. It's terrible. They have to give three or four rounds of their normal pain medication, whatever that is.
Bethany Weathersby:
So, I'm just guessing, I'm hoping that other women didn't feel it as much as me during an IUT, that's what I'm saying. But they do give the mom, they inject the skin with a topical numbing agent. And that is, Dr. Moise talked about what he uses.
Molly Sherwood:
The Bupivacaine.
Bethany Weathersby:
And I will say, once the needle was in, it was not painful.
Molly Sherwood:
How long is the whole thing? All the time of the needle being in there?
Bethany Weathersby:
Oh gosh, well, I'm usually somewhat sedated so I'm not keeping an eye on the clock, but, I feel like I'm in the OR for an hour. They're very careful and slow with getting the needle in, drawing the baby's blood, and putting the blood in. They have to be very meticulous. And then they check the baby's position. There's like an ultrasound machine set up and all of this is ultrasound guided. That's how they know where to do everything, they're looking on ultrasound. And so that's another part of the team is, the ultrasound tech is in there helping, nurses are helping and assisting. So, they check the baby's position, the baby's position is so important. And the cord insertion point is also super important. And the placenta position too. All of that kind of comes together for the IUT, and the doctors look at all that when deciding where to put the needle in.
Bethany Weathersby:
I remember one time my son was, it was like later, at later gestation he was gigantic. So, his spine was pressed up against the cord insertion where the needle was supposed to go in. The back of his, he was just pushing up against it. And that was really tricky. That was a much longer IUT because they had to try to move him, and it was just really hard. When he's crushing the cord, that's where the needle's supposed to go in, just imagine, how do they do it?
Molly Sherwood:
Oh my gosh.
Bethany Weathersby:
So yeah. So then they stick the needle in to the mom. And like I said, I could feel the whole thing, but once it's in, it's fine. And sometimes they have to go in multiple times to get it right. So then they draw a little bit of the baby's blood out once the needle's in, and they keep the needle in because every time you puncture the umbilical cord, it raises the risk of something happening.
Molly Sherwood:
And infection risk too, I'm sure.
Bethany Weathersby:
Right, yes. So they try to go in as little as possible, but once the needle's in, they leave it there, they draw the blood and then they test the baby's blood to find out how anemic the baby is. So they look at the hemoglobin or hematocrit. And then that is, the beginning hematocrit number is very helpful and I always kept track of this, but we can talk about that later. And the doctors use that number to calculate how much donor blood to give the baby. A more anemic baby will need more donor blood, obviously. So, then they give the donor blood through the needle and they do it very slowly. You don't want to just push blood quickly into the baby's system.
Molly Sherwood:
Right. That's so funny you say that because I was, again, looking up that... I'll put a link to this, because that cool study out of Leiden with the 1600 women having IUTs, they talked about the importance of not transfusing too much. Don't put pressure on the heart unnecessarily. And you know what's super interesting? They define their criteria for a successful quote IUT is simply if you put in more blood than you withdrew to check the baby's hematocrit.
Bethany Weathersby:
Right.
Molly Sherwood:
Isn't that crazy?
Bethany Weathersby:
Yeah, that is crazy.
Molly Sherwood:
Which I totally understand. It's just like, this is such a risky and nuanced thing that even that is a win and it totally is.
Bethany Weathersby:
Yeah, I totally agree. Even just getting the blood into the right place can be really tricky sometimes. I love their system that all patients are going to the same place and the doctors are getting so much experience with this procedure.
Molly Sherwood:
I know, I wish the United States were not such a huge country.
Bethany Weathersby:
I know, I know that's part of the problem, I think that's true.
Molly Sherwood:
What can we do?
Bethany Weathersby:
So, I did forget to add that before they start the IUT, they do give the baby a paralytic through the needle. Sometimes that's through the umbilical veins, sometimes they have to just actually jab the baby's little thigh with the needle, or their little bottom. I think they usually go for the thigh. We had to do that with my babies, some, and they just inject the baby with a paralytic. And then again, Dr. Moise also does a little sedative for the baby. Like he said, a whiff of fentanyl.
Molly Sherwood:
Just a whiff. Oh my gosh.
Bethany Weathersby:
He did tell me that he does that because babies sometimes gets stressed out if they're paralyzed and they can't move and they understand that something's wrong and they should be able to move and they can't. And they get stressed out and their heart rate can go up.
Molly Sherwood:
That's so interesting.
Bethany Weathersby:
Yeah, but when he gives this sedative, then the baby is way more chill. He's just like, this is fine.
Molly Sherwood:
Babies are so smart. And also earlier when he was saying that he's had a baby reaching and grab the needle, I really want to meet that baby now. Is that baby an MMA fighter? What is that baby doing now?
Bethany Weathersby:
I would love to meet that baby.
Molly Sherwood:
I know.
Bethany Weathersby:
Oh my gosh.
Bethany Weathersby:
Okay, so after they give the donor blood, they check the baby's blood again and they pull out some more blood of the babies' and test the hematocrit again to make sure that the baby got enough blood. And so, that ending hematocrit or hemoglobin, my doctors always used hematocrit for that, is really important and I also kept track of that number too, because it shows that it was successful, the procedure was successful. And then it helps the doctors calculate when to do the next IUT.
Molly Sherwood:
Right.
Bethany Weathersby:
So then that's basically it, that's the end of the IUT and they take the mom to a recovery room and they really monitor closely in that recovery time after the IUT. They are monitoring, well for me, they made sure I wasn't having contractions because your uterus is irritated now, usually, after being poked, I often had regular contractions after my IUT, but it never started labor or anything, but they had to watch that closely. And then they should be keeping the monitor on the baby's heart, the heart monitor on the baby. I'm going to let Dr. Moise share here, how he monitors his patients after an IUT.
Dr. Ken Moise:
We always bring them on back to the post-operative room, typically dad's waiting there for us so I can go talk to him first, tell him how things went. Then mom will come back to that same room. I like to, if the baby's viable in particular, I want her to stay until the baby's moving, for a couple of reasons. I have seen babies begin to show problems at that point, when they first begin to move. And I want, for her peace of mind, I want her to hear and feel that baby moving and make sure that tracing looks okay. So, that may be an hour or two, every baby wakes up from the medication differently, the more anemic babies take a little bit longer to wake up from the medication. But typically it's an hour or two, and they're on the monitor, we're checking for contractions, which are infrequent. And we want the baby to be awake, and looking okay on the monitor.
Dr. Ken Moise:
I send the mom home, I usually give them a call that night just to check on them, and nowadays I text them, they like that better. So I give them a text and say, "how's things going?" And then we see them the next morning. I think it's interesting that some people will do transfusions and not see the patient the next day. Every loss I've seen has happened in that first night. And so for my peace of mind, and for the patient's peace of mind, having that ultrasound the next morning, sometimes before the patient gets on a plane, is reassuring to both them and myself that everything's okay. And through the years I have seen losses occur during that night, even with perfect procedures that are unexplained. So, I know that I've never seen a loss after that first night.
Molly Sherwood:
It's so comforting actually to hear him say he's never seen a loss after the first night. I'm sure going through this, it's terrifying, and of course you worry and wonder how your baby is doing afterwards. But if it were me, to know that in all his years of experience doing this as a world expert, he has not seen a loss after the first night, ugh, I would have such a sigh of relief maybe after hitting that milestone.
Bethany Weathersby:
Yes. I remember that 24 hours after the IUT very well, because I was just so afraid of something going wrong. But then once we did that ultrasound the next day, it was just absolute relief. I remember with my first daughter, Lucy, that was a different set of MFMs and they did not scan after the IUT. And even though I asked, they wouldn't do an ultrasound and they wanted to wait an entire week. And that was, I feel like it was one of the longest weeks of my life. Just the entire week I was so stressed out and I never felt her move that whole week. So I knew something was off and it was terrible. So I appreciate those scans the next day after an IUT so much. And I did want to add that I believe Dr. Moise is referring to losing a baby to the IUT procedure.
Molly Sherwood:
Yeah. Yeah.
Bethany Weathersby:
Just wanted to clarify.
Molly Sherwood:
Yeah, you're right. Yeah, that's an important part to emphasize. Yeah.
Bethany Weathersby:
Yeah.
Molly Sherwood:
I want to talk about spacing between the IUTs. I think an important caveat is that the MCA scans are not super reliable after IUTs start. I don't know why though, do you know why?
Bethany Weathersby:
What the doctors told me. They said that the baby is given adult donor blood and adult blood flows differently than the fetal blood, actually. And remember, an MCA scan is measuring how fast the baby's blood is flowing. And so if it's now you're measuring adult blood which flows differently, it could possibly have different results.
Molly Sherwood:
Oh, that makes sense now that you say it, but also just so nuanced. I mean, ow do people know this? It makes sense that there are only so many specialists who truly have been able to understand and capture all of this stuff.
Bethany Weathersby:
Yeah, it is amazing.
Molly Sherwood:
So, like you said, another valuable reason to have that ending hematocrit, and then they can estimate the rate of the drop that the baby will experience over time, and that helps you calculate. So, I was looking at that UpToDate article I mentioned earlier that Dr. Moise authored, and he said that they kind of plan to schedule, again, this will be dependent on anyone's particular experience, but just something to kind of work around in your mind, after the first transfusion they schedule the next for 10 days later. And then two weeks after the second one, and then three weeks after the third. So that's sort what they, he says empirically plan to do, but then he does propose the approach also if you want, of doing that calculation of a certain decline per day. And he has that available in the resources, so we'll make sure we link to those two.
Bethany Weathersby:
Yes.
Molly Sherwood:
And another thing I was wondering, because we know you've had what 17. 17?
Bethany Weathersby:
16.
Molly Sherwood:
16 IUTs. I want to know what's typical in a pregnancy once you do require IUTs like, what's the average that somebody might need in a pregnancy. And so, for what it's worth, that Leiden study, there was a range between one and seven, but the average was three.
Bethany Weathersby:
Okay. That's good to know.
Molly Sherwood:
I just love to know these things, it kind of just gives me an idea of what to expect.
Bethany Weathersby:
Right. Right. I did want to just go back to the timing thing.
Molly Sherwood:
Yeah.
Bethany Weathersby:
Yeah, I do think that it's so dependent on where you're starting off from with your baby. Like my daughter Lucy was hydropic and so anemic, and so they did the IUT, her hematocrit was six, it should be 40-ish and it was six. So, Dr. Moise later, I asked him about it and I said, what would you have done if you had been my doctor at the time? And he said, I would've given some blood and then probably gone in a couple days later and done another IUT, because she was so low. And so, that timing really does depend on where you're starting from.
Bethany Weathersby:
And then my other babies who were not so low with that first IUTs, we waited two weeks between the first two with some of them. That is just a general kind of idea of how they spaced them. But it really, it could be a range.
Molly Sherwood:
Yeah. I'm glad you added that. It's like, I swear, how do you, so hard to gather general consensus opinion on these things because it's so specific to each person. But if nothing else, all the more reason to just be cautious and have a great doctor.
Bethany Weathersby:
Absolutely.
Molly Sherwood:
So, okay, like Dr. Trevett was saying earlier on in the podcast, the usual goal is to get to 35 weeks because he was saying at that point, the risks of the procedure and having an urgent potential C-section delivery during any complications really outweigh the alternative, which is delivering a baby who's sort of early term or late pre-term. So I want to cut to another clip from Dr. Trevett, where he expands on that.
Dr. Thomas Trevett:
We try as best we can to, at 35 weeks, if we get to do a transfusion at 35 weeks, tank the baby up as much as possible to help the baby get to 37 or 38 weeks before we get concerned about the baby needing another transfusion. So that's the goal at 35 weeks, is really to allow for another at least two or three weeks of in utero life. And that helps the baby make the transition from being inside to outside in terms of breathing on its own, but also a much more mature liver is able to handle the bilirubin burden after birth as well.
Molly Sherwood:
That's a good point. I love how he talks about tanking the baby up. I really like that visual. It's like get him pumped up and ready to go.
Bethany Weathersby:
I did feel good when my baby had a full tank of blood, I will say.
Molly Sherwood:
I'm sure. Yes, I love that. I just love the visual of that. Just a happy tanked up baby.
Bethany Weathersby:
Yeah. Okay, I have something to add, sorry I keep jumping in.
Molly Sherwood:
Yes, well you have probably so many things floating around in your head. I don't even know how you organize your memories of these experiences, honestly.
Bethany Weathersby:
I don't either. So, some doctors do not feel comfortable doing the last IUT at 35 weeks. Actually, a lot of them have an earlier cutoff for that. So, just wanted to add that in there. Some will not go past 34 weeks, some even deliver at 33 weeks instead of doing that last IUT. For me personally, when I was choosing my MFM, I wanted him to have experience doing the later IUTs because I didn't want a super premature baby.
Bethany Weathersby:
So, that was kind of a big deal to me was that they did do that last IUT at 35 weeks. And then we could deliver at 37 or 38. And we had great outcomes with that. So that was one of the things I was looking for in an MFM actually.
Molly Sherwood:
I feel like when you share these stories, it really goes to show the amount of collaboration that you entered into after your experience with Lucy. And you have to find a doctor who, and of course there are plenty of wonderful doctors who work collaboratively with their patients. It reminds me of, my husband is a clinician, not in this space, but he was doing a workshop where they were ranking a series of qualities about what each doctor felt like was important for them to have. And the one that he ranked most highly, or one of the highest ones was self-doubt, or a word to that effect. Just being able to assess your own ability and question. And I just feel like that is so critical. And it shows in your experiences that you had with your doctors and also your own advocacy, the fact that you planned to be so collaborative and you had these certain criteria that you were comfortable with and you were asking all these questions and now you have these healthy babes at home.
Bethany Weathersby:
Right. Right. Yeah, definitely. I learned a lot through my daughter, Lucy, and that pregnancy.
Molly Sherwood:
Yeah. And that other episode we have talking about your story with all the kids, but we spend a lot of time talking about Lucy, I think about a lot of components of that story all the time. And it was just so special and valuable to hear. So, we got to kick back to that one too.
Bethany Weathersby:
Yeah.
Molly Sherwood:
All right, we want to talk about the two types of transfusions though, because there's more sub-acronyms under the umbrella acronym IUT. So can you explain that?
Bethany Weathersby:
Right. So there are two main ways that they do the IUTs and the most common one is IVT. So the IVT is intravascular and that intravascular transfusion where they're putting the needle into the baby's umbilical vein. And that is the most common. And that, I guess, alleviates the anemia right away, because you're putting the blood directly into the baby's bloodstream like that.
Bethany Weathersby:
Then the other type is the IPT, which is intraperitoneal transfusion. And this is usually reserved for the earlier gestation where it's harder to get into the baby's umbilical vein. And they put the needle into the baby's abdomen and just put the blood into the baby's tummy area, like a little pocket of blood. And then slowly that blood absorbs into the baby's system over days or weeks. So, that doesn't treat the anemia right away but that's usually for the earlier gestations how they do it. And then, I'll stop there, and I'll let Dr. Moise share about the IPT, he is such a master at that, the intra-peritoneal transfusion into the baby's tummy. I did want to say really quick that it is not recommended to do the IPT if the baby already has ascites or fetal hydrops, which is the fluid accumulating there, and Dr. Moise can tell us why.
Dr. Ken Moise:
Well, we know that if you have ascites, you have sort of backed up the system, is the way to think about it. So why is that fluid there? We normally produce fluid in our abdomens all the time, and the fluid gets absorbed through lymphatics, and then it's sort of dumped back into the blood vessels up at the level of the heart. So if there's ascites, at least the theory is that there's a backup or a blockage in the system. Probably because the heart's beginning to fail, and so the lymphatic system can't empty into the heart the way it normally would. So, doing an IPT would make no sense with ascites, because the blood's just going to sit there, and we have good data to suggest that's true. So you really have to get into the cord at that point to correct the anemia.
Dr. Ken Moise:
The ascites will go away pretty quickly actually, first the asides will go away and then you could do, if you need to, you could do an IPT. But doing an IPT with ascites is fatal, because the blood will just sit there and not get absorbed. Because you have to understand the physiology of the ascites, the lymphatics which are the smaller blood vessels in our body, if you would, that pick up fluid and return that fluid to the heart are blocked in the case of ascites. So putting blood in the abdomen's not going to help you. But once the ascites is gone, if you put blood in the belly, it always gets absorbed, right back into the blood system with over about 10% per day. And so it's a reasonable reservoir to put blood in the abdomen if you have to.
Bethany Weathersby:
So, this is also why it's so important to start MCA scans early in order to catch the anemia before it gets to the point of ascites or fetal hydrops. Because if you do need to do an IPT, it's not successful if the baby has fluid accumulating there already. So that's why it's good to really monitor baby closely early, and then you'll know when to treat the baby for anemia and have a higher success rate. And again, back to Lucy, but not to draw out all the mistakes our doctors made, but it's important.
Molly Sherwood:
It's a good comparison.
Bethany Weathersby:
Yeah, I hope people can learn from her. She did have ascites, she had fluid buildup in her abdomen and they still went in and did the IPT and put blood there, which was never absorbed. So, that was just, I guess they didn't have a lot of experience doing this procedure, and that's kind of evidence of that. So some doctors like Dr. Moise also do a combination of both of the types. Of the IVT in the vein, and the IPT in the baby's abdomen. And Dr. Moise, he treated me with my pregnancy, with my daughter Nora, so she had five IUTs and all of them were combo procedures of the IPT and the IVT.
Bethany Weathersby:
So, he would go in and give baby blood in the cord, and that would alleviate the anemia or treat the anemia right away. And then he would put a little reservoir of blood in her tummy, and that would absorb slowly over the next couple of weeks. And in doing that, it delayed the next IUT. So it pushed it out further, and in the end, I think she needed fewer IUTs as a result.
Bethany Weathersby:
And with each IUT procedure comes a risk of losing the baby. It's very small, well, it depends on the experience of the doctor, but it's pretty low. The fewer times you need to go in with a needle the better, right. So I think that's why Dr. Moise did the combination IVT and IPT for her IUT. And then with my baby August, Dr. Trevett just did the IVT and he did not go in and put the blood in the belly, and the IPT can be kind of tricky. I think there are risks that come with it, especially if the doctor's not super experienced doing the IPT, or if the baby's not in a good position for it, everything kind of has to line up for that. And so, they didn't really line up well with my two youngest babies, so they just had the blood in the cord every time.
Bethany Weathersby:
And so I just wanted to compare the two methods and just show you how they evened out at the end. But Nora had her first IUT at 24 weeks and her last at 35 weeks. And she needed five IUTs. And then August, he had his first IUT at 25 weeks, so a week later than Nora, and then also had his last IUT at 35 weeks, and he needed seven IUTs. So he needed more, even though he started later. And that's because we didn't do the combo, if that makes sense.
Molly Sherwood:
Yeah, it does. And I also want to add that both Nora and August have received other preventative treatments too, which it's just too much to cover here, but we'll have to talk about it in our severe disease episode too, because there are complimentary preventative things that can help in theory, put off the need for an IUT at least delay it.
Bethany Weathersby:
Yes, absolutely. I don't think they would be alive without those preventative treatments, so I'm glad you pointed that out.
Molly Sherwood:
So I looked at the Leiden study, we need a new sound effect for when we're going to talk about the Leiden study. Okay. I just wanted to know what the outcomes were. Of course, that's something you'd be curious about going into your first IUT or potentially needing an IUT one day. There was any complication at all in 1.2% of their procedures. The specific complications that happened most often, which again, this is still not often, preterm premature rupture of the membranes, which means your water broke, that's in 0.1% of the procedures. Infection in 0.1%. Emergency C-section 0.4%. And fetal loss, 0.6% of procedures, however, the fetal loss rate in the entirety of a fetuses treatment course was 1.8%, because you figure that on average, these babies are needing more than one IUT.
Molly Sherwood:
So, I wanted to put those numbers out there because of course any number at all is terrifying, but perhaps without knowing you may think it was much higher than this, but again, this is a well known globally known treatment center. And I've seen other publications that depend on the treatment center, and also depending on the year that it came out as technology and knowledge has changed, I see outcomes reporting more of like a 90 to 98, or 99% survival rate. So it does vary a little bit, but just a little helpful pieces to think about.
Molly Sherwood:
Okay, we covered a lot. Will you give us just some tips about what somebody might want to be thinking about if this is in their future?
Bethany Weathersby:
Definitely, so, I'll start with the most important one. And sometimes this is important before you need the IUT, this is something you need to think about when you're choosing your MFM. But you need to ask yourself, is this the doctor I want sticking a needle through my abdomen into my developing baby? Truly. Not every single MFM is trained to do this procedure. So, that really does affect the baby's survival rate, and the success rate of the procedure, is how experienced the doctor is doing IUTs. So I'm going to let our experts, Dr. Trevett and Dr. Moise, just tell us little bit about this.
Dr. Thomas Trevett:
You have to do these procedures frequently to be comfortable, and I don't know that you ever truly get a hundred percent comfortable with putting a needle into an umbilical vein or a needle into a baby's abdomen. But I think with experience and seeing a lot of different situations that arise, you certainly become more comfortable just through experience. And so, yes, for sure, at this point in my career I feel very comfortable and confident dealing with most situations.
Dr. Ken Moise:
I've learned a lot through the years, some tricks that I wish I knew earlier in my life that might have saved some more babies than what I know now. I think, and we've talked about this earlier, but I think struggling with how to get people experienced in IUTs is important. And we've focused on putting the needle in the cord, that's part of the battle. The training is more than putting a needle in. I remember leaving a fellow in Houston when I moved to Austin, he said, I wish I would've spent more time not just at the procedures, but listening to you talking to the patients to decide when to do an IUT, and how to deal with some of the complications.
Molly Sherwood:
Wow.
Bethany Weathersby:
So those doctors, our experts really-
Molly Sherwood:
They have that sort of self, I don't want to say self doubt, because that sounds like a negative term, but just the humility to reflect and be aware of the experience that's required and their ability to continue to self reflect, even though they're, I'm sure, in the top 1% of the specialists in the world.
Bethany Weathersby:
Yes, for sure. And that experience is so important when doing an IUT. So, here I'm going to share my next tip is just some questions that patients can ask their MFMs.
Molly Sherwood:
Yeah. And let's add these to the show notes, these are super helpful.
Bethany Weathersby:
Yeah. Okay. And I just kind of included the questions that I asked my doctors before I decided to use them again.
Molly Sherwood:
Perfect example of the collaborative effort. Sorry, I just had to pat in the back.
Bethany Weathersby:
Yes.
Molly Sherwood:
It's what we do. When Bethany and I aren't recording podcasts, we just send videos to each other and chit chat and just encourage each other and tell each other that we're not crazy and we're doing our best.
Bethany Weathersby:
No, we're not crazy. But I credit my doctors honestly, more on that part. Because some doctors are offended when patients basically interview them. Right.
Molly Sherwood:
Oh yeah.
Bethany Weathersby:
So they were just so okay with it and sat and listened to all my questions answered them, did not rush me, did not feel offended. And that was one of the reasons again, why I stuck with them. But okay, here are the questions. In general, how many IUTs do you do per year, and how often do you do them? How many did you do last year? What is your success rate? And then I think I also asked, have you ever lost a baby to the procedure? How many? Do you perform IUTs in the operating room? Do you provide mom with conscious sedation for the procedure? Do you paralyze the baby for the IUT? Walk me through your IUT procedure. And what does the monitoring look like after the IUT is finished. How do you usually decide to space the IUTs, do you just look at MCA scans, or using the scans and the calculation of the hematocrit drop?
Bethany Weathersby:
When do you do your last IUT in general? And how early have you done IUTs? How early do you feel comfortable doing an IUT? Are you willing to refer me to a different MFM for IUTs if necessary? That's such an important question. If they aren't, then that's a problem.
Molly Sherwood:
Yeah, I think that's a good, especially for, again, speaking from the low tighter perspective, I knew that where I received my treatment was not going to be where I would've been comfortable having an IUT.
Bethany Weathersby:
Okay. Yeah.
Molly Sherwood:
But I should have asked that question. Thank gosh it didn't end up being relevant in my case, but to just establish that from the beginning, knowing my center had only done three IUTs or something ever, which is to no fault of their own, it's just how things evolve. But anyway, asking that question up front, okay, if we reach a point where we need an IUT, and you've already established maybe that you don't have that level of comfort and safety with this particular doctor, will you refer me? I think that's a great tool.
Bethany Weathersby:
Yeah, a lot of doctors collaborate so well together and the local MFM will just do the weekly scans and then the patient will go to the more experienced MFM for the IUT and it's like, beautiful. It's beautiful when they are willing to just work together and refer when needed.
Bethany Weathersby:
Okay, some other tips, if possible, have a friend or your partner or a family member there with you for the IUT. Usually they won't let the person in the OR with you, especially in times of COVID, but it's good to have them there with you. The only IUT of all 16, when I did not have somebody with me is the one where my son was going into distress as they prepped for the procedure.
Molly Sherwood:
Oh my gosh.
Bethany Weathersby:
And they had to do an emergency C-section instead of the IUT, and I was alone.
Molly Sherwood:
Wow.
Bethany Weathersby:
For my first C-section ever. And my husband was four hours away here at home, so he couldn't make it in time. So, just have a person, have a person there. And then, it's so good to communicate constantly with your nurses, your doctors, your anesthesiologist. I learned to say, I am a natural redhead and the pain meds are weird with me. And so, also I have a history, I would say I have a history of loss and a bad history with this particular procedure. And so I have a lot of anxiety about this. And so that helped them know, she needs a sedative for this procedure.
Bethany Weathersby:
And then also if you get into the OR, and it's freezing cold, which normally it is, I remember just being there and shaking uncontrollably, because I was so cold. And how can you do this precise procedure on a patient who's trembling and shaking? So, speak up, just say, I'm freezing. I need some warm blankets, or Dr. Moise would put that little heater at the foot of the bed and it was so nice, it would gently blow warm air under my blankets for the IUT.
Molly Sherwood:
I think I had that before I had, well, after my most recent delivery, the placenta was stuck, I ended up hemorrhaging. Anyway, I had to go to the OR for an emergency DNC and I was panicking, but I think I was in such a panic and I had just given birth with no epidural and it was so hot. And so the doctor was like, here, here's this thing. And she gave me this, it was a weird inflatable, it was a little hot igloo that was blowing air. And I just remember screaming, get this off of me, and I smacked it. She's like, okay, okay, I'll take it off. It's too hot, too hot.
Bethany Weathersby:
I thought you were going to say like a cooling blanket.
Molly Sherwood:
No. She was like, let me warm you up and I was like, Ugh.
Bethany Weathersby:
Oh my gosh.
Molly Sherwood:
But it is cold otherwise, I think I just was, I don't know feeling a rush.
Bethany Weathersby:
Well, if you're hot, speak up.
Molly Sherwood:
Right. Either way, if you're cold or if you're hot.
Bethany Weathersby:
You do want to be as comfortable as possible for this procedure, because you have to be totally still. So, if you're super anxious, some doctors let you bring in music or headphones to listen to so you can kind of zone out. But, it is good for the doctor to be able to communicate with you and you can hear them because sometimes they say you need to roll to your left or you need to do this or you're breathing too heavily, you're moving too much. And it's just, you need to, I don't know, you can talk to your doctor about it. But some women have a lot more comfort when they're listening to music.
Bethany Weathersby:
And then the last tip is to ask for the beginning and ending hematocrit from the procedure and write them down. Obviously you can't write them down in the OR, but afterwards say, can you tell me what the beginning and ending hematocrit were, and then write it down and keep track. And then you will have more, I guess, power to make decisions about your care and more power to protect your baby. Because what if the doctor is waiting too long to do the next IUT? And you can do the calculation yourself, looking at that ending hematocrit and know, we're getting into, I don't feel comfortable waiting this long. I think those are all my tips.
Molly Sherwood:
Those are awesome. Okay, we definitely need to put, we're going to put all of those in the show notes, these sort of questions and tips. And we'll make sure to paste links to the articles we talked about. And we also have cool tools on our website that talk about this, our clinical decision support tree, it's just like a flow chart, just a big picture view of this management of the disease. And then we have a provider's document, we call it our provider primer, it's like 22 pages long that's like our version of UpToDate for doctors. And just tons of different links in our resource library. And we'll just post as much as we can in here and get all these resources together.
Bethany Weathersby:
Great. Okay. We did it. If you, your partner or someone close to you is experiencing HDFN, we are here for you, you are not alone. We have a great resource library on our website allohopefoundation.org. That's Allo, spelled A-L-L-O HopeFoundation.org.
Molly Sherwood:
Thank you for listening. The Allo Podcast is a production of the Allo Hope Foundation. It was researched and written by Bethany Weathersby and me, Molly Sherwood. It is produced and edited by CJ Housh and Eric Hurst of Media Club. The Allo Podcast is sponsored by Janssen Pharmaceutical Companies of Johnson & Johnson