Dr. Terry Gernsheimer

There are obstetricians who are experts in this, and we're going to work with that person. So that's, I think, really the first thing to give somebody some confidence that this is going to be okay. I think the other thing is I've been doing this with Dr. Cheng for, I don't want to tell you how many decades, but I can tell you that, you know, I can, it won't even cover one hand to tell you when we've had problems and ever said, oh, please don't do that again. And certainly, I can't remember a patient who didn't get through safely, both mom and baby.

Narrator

Welcome to the PDSA podcast, Bruised but Not Broken, Living with ITP. The diagnosis of a bleeding disorder like immune thrombocytopenia may leave you wondering, how can I really live my life with ITP? PDSA's podcast, Bruised but Not Broken, Living With ITP, brings empowering stories, the latest research and treatment updates, lifestyle tips, and answers to the real-life questions the ITP community is asking. Here's your host for this episode, Barbara Pruitt.

Barbara Pruitt

Pregnancy and ITP is a big concern for any woman of childbearing age that has ITP. One thing that is clear is if you have ITP and you're planning on becoming pregnant, you need to have your hematologist, and your obstetrician coordinate your care during pregnancy. That is why we have two very special guests today to talk about that coordination of care. Our first guest may be familiar to you, Dr. Terry Gernsheimer. She is a professor emeritus of hematology at the University of Washington School of Medicine. Her research focuses on pathophysiology and the treatment of immune platelet disorders and pathologic immune responses associated with transfusions. She has clinical research interest in transfusion management of hemopoietic stem cell transplant and surgical bleeding in patients undergoing solid organ transplant and cardiovascular procedures. She's made significant contributions towards understanding the pathophysiology and the management of ITP, and she wrote the guidelines on ITP in pregnancy. Thank you so much for being with us today, Dr. Gernsheimer.

Dr. Gernsheimer

Good morning. Nice to be with you.

Barbara Pruitt

Also joining us today is Dr. Edith Cheng. She is the medical director of perinatal genetics and is a professor of maternal fetal medicine and chief of service for obstetrics at the University of Washington School of Medicine. She also serves as a professor of medicine in the Division of Medical Genetics. Dr. Cheng is recognized for her leadership and commitment to advancing maternal and fetal health through both clinical care and academic excellence. Welcome, Dr. Cheng.

Dr. Edith Cheng

Hello, thank you for inviting me. Glad to be here.

Barbara Pruitt

Well, we are honored to have both of you here today. I know both of you have very busy schedules and it's wonderful that you've taken the time to be with us today. I understand that the two of you have also collaborated on quite a few ITP pregnancies, is that right?

Dr. Gernsheimer

That certainly is.

Dr. Cheng

Yeah.

Barbara Pruitt

Well, that's definitely what's needed. Let's go ahead and get into this. Dr. Gernsheimer, if you have a patient with ITP who's considering getting pregnant. Do you ask them who their obstetrician is or do you guide them to an obstetrician that you've worked with before? How do you handle that?

Dr. Gernsheimer

Well, obviously I often guide them to Dr. Cheng. That's why we were giggling about that. I think one of the first things I do say is we've got to have you work with an obstetrician who has experience in this. And most importantly, who is willing to collaborate with your hematologist? You know, part of the problem can sometimes be that someone is in an area that doesn't have what we call high risk obstetrical care. That doesn't mean that your obstetrician can't also consult. Right. with someone who has high risk, who does high risk obstetrical care. And I know, for example, Dr. Cheng and her colleagues go out to areas in other parts of Washington state where that kind of care doesn't exist. And they work with those obstetricians and sometimes bring them in the late period of um getting ready for delivery back in. But I mean, I think that whole period needs to be a coordination of care.

Barbara Pruitt

So that that coordination, Dr. Cheng, is done remotely when you when there's a patient that's not close by. You coordinate the care with them by telephone? How do you coordinate that?

Dr. Cheng

Yeah, it's really great. I think that, to Dr. Gernshimer's point, the care and consistency of care for mother and baby really requires coordination. And these days with telemedicine, it no longer, ah the reach and and the coordination and communication is so much more fluid, right? And it's patient-centered because we don't, as a representative University of Washington, we provide consultative care to the WAMI region. And so again, as Dr. Gernsheimer alluded to, our reach is to all corners of the state of Washington and the Wyoming region. So I think that telemedicine has been an enormous gift to us, but most importantly for the patients. So oftentimes what will happen is that, as Dr. Gernsheimer said, you know there'll be a hematologist locally, works with an obstetrician. Obstetrician reaches out to us. And we are then able to have almost a four-way connection with the patient, right, through telemedicine. And then we can consult with the patient through telemedicine without having the patient driving all the way over to Seattle. And sometimes that care throughout the pregnancy is coordinated so that the patient can actually deliver safely in her community. So again, the right place for the right patient. and you know safe

Barbara Pruitt

And the correct, the right advice too from experts that know what they're dealing with here. So what kind of advice do you give an expectant mother who's feeling very anxious about ITP and a pregnancy? I know I've been through this, so I know that there is anxiety related to it. Mine was a long time ago, but how do you try to calm them down or reassure them? This this is for both of you.

Dr. Gernsheimer

So I'll start from the hematology side because it's probably a patient. I'm going to assume it's patient who already had knew she had ITP and we're already working together. And I think um as we were talking about, one of the first things to do is to be able to say there are obstetricians who are expert in this and we're going to work with that person. So that's, I think, really the first thing to give somebody some confidence that this is going to be okay. I think the other thing is, you know, I've been doing this with Dr. Cheng for, i I don't want to tell you how many decades, but I can tell you that, you know, I can, it won't even cover one hand to tell you when we've had problems and ever said, oh, please don't do that again.

And certainly i can't remember a patient who didn't get through safely, both mom and baby. So I think that's the first thing to assure someone of is we're going to we're going to get through this. We'll all get through this together. Edith, you want to comment on that?

Dr. Cheng

Yeah, I agree. I agree. And so, you know, for Terry and i the first thing is the earlier, the better in your pregnancy to seek consultation. So maternal fetal medicine, obviously we can't be everywhere and we don't expect the patients to come to see us. And that's why the telemedicine works, right? Her OB can connect with us. The patient connect can connect with us independently. by So the earlier in pregnancy, the better. And I think that's probably the most important thing. The other question that I often get and Terry gets to is, have you ever seen this before? Yeah, all the time. And on the one hand, I want to say, no, you're not special. But on the other, it's like we do this a lot. And so we're comfortable and confident and be able to, you know, take you through your pregnancy safely.

Barbara Pruitt

Well, that's something that's really important for the patient to feel confident in the care that they're receiving. And just to hear the two of you talking, I mean, I would definitely feel confident with both of you on my side.

Dr. Gernsheimer

I think one of the important, because you immediately once you're pregnant, you immediately become a mom. And by that, I mean that you start thinking of your baby first. And so the question I frequently get is, is my baby going to be okay? And so I think that that is one of the first things I also say is, and your baby's going to be just fine.

Barbara Pruitt

Good. That is a big concern. What are some of the other concerns that your patients have? talk to you about that, you know, you have to deal with these questions that they have?

Dr. Cheng

You know, from the OB side, you know, one is for sure knowing that I know your hematologist or I'm working with your hematologist and that we are always in close communication. That's number one. Number two is if I am not the primary and I am the MFM consult, yes, I am going to be, or I know you're, and you know, I will be talking to your OB. We are So I think that the patient, it's important for the patient, if there are several people taking care of that patient, that the patient feels that we are fluid ah in our communication with each other, right? That we are really, although we may be three or four specialists, we are one um in our voice and taking care of. I mean, that goes a long way. That's really important.

Barbara Pruitt

To know that you're all on the same page. You're all working for the same goal, a safe delivery and a healthy baby and mom. Do women, I'm sure they express concern about, should I have a vaginal delivery or a C-section? i I'm sure there's lots of questions around that. What do you, and every patient is different. I understand that. And every case is different. So you can't, I know you can't necessarily say, oh, well, this is what we you have to do because every there's always variables. But what would you tell an expectant mom about that choice or those options?

Dr. Cheng

My favorite thing is that there are really only three reasons for C-sections. three medical reasons for C-section. One is basically that the baby isn't cooperating and it isn't presenting itself as head first. Number two is that the labor does not progress and cervical dilation is stalled ah in spite of all of the best and safe efforts to support further labor know, there's further, you know, so it's what we call a rest of labor. And then the third is fetal distress, meaning that labor is actually progressing, cervix is dilating, but the baby doesn't like it. So I think that for somebody with ITP, I guess the question really is there's some people kind of say, oh my gosh, I can't have a C-section because I'll bleed and hemorrhage. or I have ITP and it's safer for me to have a C-section, right? So, it can go either way. So, I usually start with that. And I usually just kind of say, you know, your pregnancy will be taken care of and we will proceed with, you know, labor and delivery as medically indicated.

Dr. Gernsheimer

I think as a hematologist before They even get there to that discussion with their obstetrician. Hopefully I've already said to them, your delivery will be based on obstetrical indications and your ITP is not going to interfere with that either way. We can support you however we need to through either a C-section or a vaginal delivery. And in fact, I have to say, I've seen Dr. Cheng deliver a baby at 20,000 platelet counts where everybody would say, oh my goodness, you can't do this. And baby and mom were absolutely fine after a vaginal delivery. So, you know, it’s, I think it would have been harder on us to actually go for a C-section at that point and for us to try and deal with somebody who now has a cervical wound. So, you know, again, that's what I should be telling mom is we'll support you whatever the ah obstetrician decides.

Dr. Cheng

Yeah, that's a really important point because, you know, if we do need to go to C-section, that's, that's you know, what Dr. Gernsheimer said was absolutely critical because then, you know, it the natural response is, oh my gosh, I have a bleeding disorder. You're going to take me to surgery and I'm going to bleed and I'm going to have these complications. But the whole point with partnering with Dr. Gernsheimer and or hematologist is to say, we are going to get you through it. We are going to give you whatever you need, right? To clot appropriately and safely. So that's, you know, I think that that's number one. I do think to follow up on that question about delivery is, the elephant in the room in terms of labor and delivery is anesthesia. And I know that you sort of alluded to that earlier. It is a complicated question. Dr. Gernsheimer and I have gone through that a lot with a lot of patients. And we have to bring in our OB anesthesiologists to partner in discussion of safety of what we call neuroaxial or you know regional anesthesia, you know an epidural.

Barbara Pruitt

Right. And spinal anesthesia is another thing that I think that's pretty much avoided, isn't it? but

Dr. Gernsheimer

No, no, no, no. It's not necessarily. yeah And this, if things get complicated and it's really important for people to understand this because There are guidelines. So you know, anesthesiologists understandably are very risk averse. And then when we start talking about moms and babies, people are real sensitive about do no harm. But at the same time, if you have a mom who's in a lot of distress that isn't necessarily not doing any harm either. And I think we can, there are numbers that are published out there as to when it is safe to do a so ah spinal injection, at what platelet count, at what platelet count can one safely do an epidural. And that needs to be discussed way ahead of time with the anesthesia team and the hematologist and the obstetrician. And if we have an anesthesiologist who is uncomfortable giving them the documentation that maybe they'll feel more comfortable having in order to proceed if the count is not, you know, where they think it should be.

Barbara Pruitt

Where they're comfortable with. Yeah. Right. So general anesthesia is just used for, I guess, a C-section then?

Dr. Cheng

Yeah, correct. So the next extension to that conversation is, okay, Dr. Cheng, you just told me that it was actually safer for me to have a vaginal delivery to labor and, but you're now telling me that Dr. Gernsheimer and you, you're telling me that there's some concerns about whether my platelet count is high enough to safely have regional anesthesia, right? And regional anesthesia, so we use the term regional because it's more general. It encompasses both epidural and spinal. That's really the next logical question. And so what happens is that OB anesthesiologists and or anesthesiologists who sort of have a little bit more experience with our ITP pregnancies, we have IV or peripheral ah medication um that's very fast acting, pain management medications that we can actually give mom through the IV during her labor. to help manage the contractions. It's not as It's definitely not as good as a regional anesthesia. Definitely not. And because they're fast acting narcotics, the risk to the fetus is very low to see that. And so that's a good thing. But the other thing is that because they're fast acting, they have to be on continuous infusion, and it doesn't work as well. So that's the trade off. And we begin that conversation with our patients if Dr. Gernsheimer and I think that her platelet count might not be high enough to safely have regional anesthesia. So, to continue that, then she's going to say, okay, well, I don't know that I want to do that, but then the only way that I can completely be pain free is to have a C-section and my choice going to be general anesthesia. Yeah. These are real life conversations.

Barbara Pruitt

Right. I'm sure you have to have them. And the sooner the better, because exactly if you have a plan in place, then you know what's going to happen and you're not as anxious about the whole scenario. And things can always go left or right and you might need to make adjustments. But as long as you've had these deep conversations ahead time, it's going to take some of the anxiety off of you as the pregnant woman.

Dr. Cheng

Yeah. I mean, thing Terry, I think you and I have shared a handful of patients where they've chosen that route and say, you know, I would rather have general anesthesia because you can support me with, you know, platelets, et cetera, to control my risk for hemorrhage um because I don't want to go the other route.

Dr. Gernsheimer

And, you know, it it's not that as long as I think we're talking about the patient being safe, it's not for me to make that decision for her. It may, you know, whether or not that's what I would choose. You know, we I think it and we've said this about ITP many times and the treatment of ITP, you lay out all the options and you tell the people that you're talking to the pluses and the minuses. And in the end, it has to be a shared decision.

Barbara Pruitt

Yep. Right. I know but just from my experience, which was years ago, my platelet count was 16,000 at the time of delivery. And I had done a lot of research, had talked to doctors, you know, on the other side of the U.S. that had had experience in delivering um with low platelet counts. I was encouraged to go ahead and do have a vaginal delivery, but my fears were I didn't want to have something unexpected happen, like a vaginal tear, and I felt like a C-section for me would have been the best option because you would see the bleeding. And I know that I was transfused. That's the only time I've ever been transfused but ended up with a very healthy baby. So, and I was fine. So that was a decision that my obstetrician at the time had me really research and look into it all, but that was my, our decision and it worked out fine. You know, I wasn't there to see her, when she was born because I had general anesthesia. And of course, they took her to the children's hospital right away because her platelet count was 16,000. But anyways, like you said, shared decision. And we've learned so much more since then. So I mean, this is old timey for me before they had had a lot of this information available.

Dr. Gernsheimer

I think we're better at getting a patient prepared with a higher platelet count when delivery comes around. So we've got options to get the count most of the time into a really safe range so that that's not the issue, hopefully.

Barbara Pruitt

And as we know with ITP now, there's a lot of choices with treatment. So I understand completely what you're saying, because back in the 80s, there were very few. And I know one of the issues that a pregnant mother would be concerned about is, are the medications that she's on, are they going to be affecting the baby and in a negative way? And I'm sure that's a big question, that there's not a lot of research done on that.

Dr. Gernsheimer

Because we're so nervous about ever treating pregnant women for the reasons I said is, you know, pregnant women are precious to everybody, you know. We've all had a mother at some point. So I think there's no question that we that there are some that medications that we're perfectly comfortable using, but it's usually because they've just been used so long, not that research was specifically done on this population. And that's because everybody's uncomfortable doing research on pregnant women, um including the disease that developed the medication. So then what we eventually have is case reports and collections of case report series um that say, well, we treated this many patients with rituximab, for example, and this is what happened to the baby, and this is what happened to mom, and these were our outcomes for both. So yes, and I think there are some medications that we will call, you know, as much as we can, completely safe, some that are probably safe and some that we try very hard to avoid and some that are too know new and we just don't know and we really also would recommend against using them.

Barbara Pruitt

Right, right. With ITP, we know that there's antiplatelet antibodies in your body. And I know that sometimes it can pass through the placenta into the baby, how do you handle that situation? Or how do you talk to your patients about the possibility of that happening?

Dr. Cheng

I mean So I have a lot of white hair. and ah and doing Same here. Doing this longer than I would like to think about. But um in, quote, the old days, we actually routinely did something called percutaneous umbilical cord blood sampling; pubs or cortisentesis at terms. So like closer 37, 38 weeks, you know, to see what the baby's platelet counts were. So because of this unknown concern that perhaps there would be risk for intracranial hemorrhage or for a vaginal delivery, we don't do that anymore. That was actually the Society for Maternal Fetal Medicine basically said, you know, the data that we have does not support that the risk of a PUBS at that gestational age versus the benefit, since we didn't really have any data supporting that these kids were at increased risk for intracranial hemorrhage, at that that should not be done. And so we stopped doing that probably 30 years ago.

However, we do identify that we do know that as per what you said, your daughter had you know a platelet count of 16,000. We do know that you know, about 10% of kids do have, babies do have thrombocytopenia. So from an obstetrical point of view, our rules for delivery management is there will be things that we wouldn't do. Like we wouldn't put a scalp electrode to monitor the baby's heartbeat because it's a clip, right? On the baby's scalp. We do not do assisted vaginal delivery. So we will not put forceps on and we will not put vacuum on. And so my favorite words are this baby has to slide out on its own. And then what we do is that we have we obtain some cord blood and run a CBC on the baby right away.

Barbara Pruitt

Okay. That makes sense. I know we did get a question from social media regarding this. Her question from Charmy was, I'd like to know the effect on the fetus when using medication to treat ITP. Can ITP be detected early on just like non-invasive prenatal testing?

Dr. Gernsheimer

I think she means ITP in the baby. Yeah. In the baby. Yeah. I think we already talked about the medications. I mean, some of these medications do cross the placenta. Some of them actually, like some of the corticosteroids might actually have late on in pregnancy may have a good effect on the baby if we if the baby has to come early. But you know other medications, I'd say we worry about rituximab because it does kill off lymphocytes and the baby is dependent on mom's number one, antibodies, the good ones as well as bad ones early on during the first few months before he or she can make their own antibodies to stay healthy. And they also might be delayed in making their own lymphocytes. So there are medications that can affect the baby. A lot of medications can get across the placenta. But again, that being said, you know generally these things are safe I'm just following. And in terms of detecting ITP in the baby, other than looking for other kinds of genetic thrombocytopenias, inherited thrombocytopenias, there's more risk, as I think Dr. Cheng was alluding to, with doing any any invasive testing. And I quote, non-invasive testing, for example, some people would do scalp vein testing, was is inaccurate. Right. So there's no way to really know when baby's born, we're going to find out. It be dealt with. I think the important thing is if it happens, it can be dealt with. It can be treated safely.

Barbara Pruitt

Absolutely. Well, that's good to know. Now, when and or if the antibodies cross the placenta, they usually, my understanding and my experience is that they those antibodies are short-lived. They will die off and the baby's platelet count will then rise to a normal level. Is that still correct? Is that usually what happens?

Dr. Gernsheimer

So usually. I have seen babies who whose moms had ITP need to get treated with IVIG for four months.

Because antibodies, I mean, yes, it's true. Antibodies go away. Some of these babies, within a week or so, boom, they're back. They get one dose of IVIG. Sometimes they get transfused with platelets. If platelet can't come goes up, it never comes back down. That's the end of the story. Everybody's happy. But occasionally, these babies need repeated doses of IVIG. I've seen it take absolute months when people and people start getting nervous, no question, and particularly in a breastfeeding mom, then the question comes up, is the mom passing antibodies by breast milk? And so I'm going to say that's rare. It's extremely rare. But I also want to make it clear that mom doesn't have to necessarily stop breastfeeding at that moment. And what we recommend, because I think this is really important, is that mom start throwing away the breast milk, but continue to pump. If that's what she wants, okay? If that's what she wants, you can continue to pump. Let's see what happens to the baby.

Barbara Pruitt

On formula.

Dr. Gernsheimer

Formula. And then if the baby's platelet count comes up on its own, it you still don't necessarily know whether or not that was about to just happen and it's coincidental. And so you can go back to breastfeeding and then if the baby's fine, you're home free. If not, and the platelet count drops again, then you can say, okay, I give up. But I think that whole little discussion is really important.

Barbara Pruitt

Right. Well, if the baby's count is low at birth, and does not go up, does that tell you that the mother has an inherited thrombocytopenia as opposed to an immune thrombocytopenia? Would that be a good indication?

Dr. Gernsheimer

A baby light who's got a really low platelet count at birth is almost always gonna get transfused somewhere in there. And both are going to respond. I think at that point, that's when you might become suspicious and say, maybe we better do some further testing here. Hopefully, somebody who has ITP, their physician their hematologist has previously looked into other family members. Do you know anybody else? I mean, there's what we think of as inherited ITP, but we're realizing there are so many other disorders that are inherited thrombocytopenias that hopefully that's been looked into already.

Dr. Cheng

This new development of thinking and it's expanding the scope of a maternal thrombocytopenias in pregnancy. Because, you know, oftentimes, you know, healthy women really don't go to the doctor and they don't get a CBC. And the only time that they get a CBC is actually at their first prenatal visit. Because if they've been completely asymptomatic of anything, you know, why would, right? So oftentimes we don't discover the thrombocytopenia until she presents for her first prenatal visit. So again, thinking through from being a dinosaur to more recent is the old days, it was just it was either gestational thrombocytopenia or ITP, right? Now I think for the obstetrician and clearly for the maternal fetal medicine specialist, we really have to think beyond just that. And think about the inheritance from the cytopenias and that your flag kind of has to go up in your brain if you go, a take a family history, this platelet count just doesn't feel right. And or if there, and Dr. Gernscheimer has taught me that, gosh, she's tried every single drug under the sun to bring up her platelet and it's no it's still not responding. Well, you know it not Edith, think. It's not it may not be ITP so Edith think I think this is the scope. This is the stuff that we sort of now have to think about. This is another reason why the earlier the better to seek consultation.

Barbara Pruitt

Right. And I know that for ITP patients, and I've had a couple of podcasts already about having a very good family history so that you know if there's any little cracks in there that might lead you in a different direction. And then genetic testing, or whatever needs to happen to get a more accurate diagnosis if it's not truly ITP. But Dr. Cheng, you mentioned the term gestational thrombocytopenia, which I've never heard those together. I've heard of gestational diabetes, but gestational thrombocytopenia. And I know what that is because I've had friends, daughters and stuff have thrombocytopenia only through their pregnancy, and then when they deliver, it goes away. What's happening there?

Dr. Cheng

So it's an entity where we understand that during pregnancy, in general, our white count goes up a little bit, our hematica goes down a little bit, and that we have a slight decrease in our platelets. From the American College of OBGYN and Society Maternal-Fetal Medicine, we kind of give that label of potentially gestational thrombocytopenia when the platelet count is sort of, you know, in the 100s. You go, huh, this is; And again, same thing, healthy woman, first pregnancy, we get her first CBC, her platelet count is 133, huh? You know, you take a good history, blah, blah, blah, blah. And so, and if it's stable, then you kind of say, oh, she has gestational thrombocytopenia with; but there's nothing beyond that, there's no test or there's there isn't any test or anything that confirms that.

Barbara Pruitt

Okay. But would you expect that then with consecutive pregnancies with that person? Would it happen again?

Dr. Cheng

It might. It might.

Barbara Pruitt

And it could just be a minimal drop, not necessarily like down to 50,000 or something. It could just be, like you said, 130 or something.

Dr. Cheng

And the clue the clue would be that if it's for whatever reason related to pregnancy, postpartum, she should, you know, her platelet count should normalize. And again, we're going to go back to if this person has never, ever had a CBC in her life, you do not know what her baseline is. Right? So again, you're going to say, okay, I'm going to see, so, you know, I'm an OBGYN, I take care of this patient, you know, even when she's not pregnant. So I have the opportunity now to get her CBC, you know, let's say three or four months, you know, not six weeks, but three plenty of time for the effects of the pregnancy to go away and get her pregnant. It totally normalizes. You go, okay, in retrospect, I will make that diagnosis. But, you know, if her platelet count is still like 110, 120, know, I might want to call Dr. Gernsheimer or somebody and say, you know I just want to be sure that it isn't something else.

Barbara Pruitt

Right. And is this also case where you would want to make sure that the baby is followed up with blood work to make sure that the baby's platelet count isn't low also? Is there any scenario where you would advise your patient to interview or meet with a neonatologist or a pediatric hematologist prior to delivery?

Dr. Gernsheimer

The only time I suggest that is if I'm getting concerned that this is an inherited thrombocytopenia. And those guys, by that I mean the pediatric hematologists, are that the ones that specialize in, the in but and I'm thinking specifically of someone like Michelle Lambert, Dr. Lambert, who's over at Penn, who specializes in inherited thrombocytopenia. That testing is very difficult to get. It's extremely expensive. And getting your insurance company to pay for it frequently is having the right doctor who knows how to get it to happen. So, I mean, if we're really concerned that we're looking at an inherited thrombocytopenia and the initial screening maybe has been done, which may involve just um a few genes, there are people who are looking into things like this, you know, further. So, but that's, I think, a pretty special circumstance.

Barbara Pruitt

Okay. So that's not a normal thing that you would do.

Dr. Cheng

But from a day-to-day practical pregnancy, the majority who have, you know, sort of ITP, we, so again, that is part of the anticipatory guidance of care, of continuity of care, is that the pediatrician, you know, for that service line knows that we have, we're delivering a baby that otherwise has a completely unremarkable pregnancy with a mom who has ITP and we will be getting cord blood. And so, the pediatrician needs to know that. That probably is singularly the most important thing to do because that is the majority of the cases. And in fact, that's the most important thing not to miss, right?

Barbara Pruitt

Right. To make sure you've got that cord blood and it's being looked at as far as the baby's concerned. Right. Right. Well, that's great.

Dr. Gernsheimer

Also, if there's, you know, we're going to need follow-up, particularly even if the baby is not severely thrombocytopenic. I mean, you mentioned your baby was and obviously needed care right away. But if a baby gets delivered with a platelet count of 80,000, 90,000, which is definitely not normal. That baby may not need treatment, but that baby needs follow-up because what we do know is that in the following days, more than likely that platelet count is going to drop. And so somebody is going to have to follow that baby and it's clearly not going to be me and it's no longer the obstetrical service, it's the pediatric hematologists.

Barbara Pruitt

Right, right. Okay. Well, it's all a matter of having your team together. I mean, and the coordination of care is just so important. I have a couple more questions that came from social media. And let me ask you these. Jenny asked, can ITP return during pregnancy, even for patients that are in remission, regardless of the treatment that they had to achieve the remission?

Dr. Gernsheimer

So, and she specifically mentioned splenectomy in her question. And that's, so first of all, the answer is overall yes. I mean, you could have had um ITP as a teenager and everything went away and it was a short-lived kind of issue. And suddenly 10 years later, you're pregnant and find out your platelet count is low again, even though you've had normal follow-up or, you know, if it can occur later. So yes, it can come back. We don't believe that ITP is ever really, quote, cured. We think it is in remit; That's why we use the term remission. andAspecifically with splenectomy, you may well be making antibodies and those antibodies are circulating even though your platelet count is not low and you're not requiring any other therapy like a TIPO or a steroid or any other immunosuppression. And we know that those babies can be, in some reports, even more at risk of being born thrombocytopenic because that does not take the antibody away. It just removes the organ that is destroying the platelets primarily. And so we don't know what will happen with baby. And it's an important thing to tell your obstetrician, I've had a splenectomy.

Barbara Pruitt

Right. And even if a woman is in remission, not thinking about her ITP at all. That's right. It's very important that she tells her obstetrician, oh, I haven't been to a hematologist in 20 years, but you know I did have ITP when I was a kid, but you know I think that's something you need to think about. I mean, we'd all like to forget we have it, but it's there. And I know as a patient, The idea of going into remission is fabulous, but there's always that thing in the back of your mind that, oh, no, I might relapse at some point. So it doesn't matter whether you're pregnant or not. The relapse could happen at any time, right?

Dr. Gernsheimer

Yeah, but I think teenagers are more likely to say it's over. And so I you know I would hope that the hematologist at the time of a splenectomy has had that conversation with a young woman, but it's never over. And again, that's why we never use that term. I'd like to someday use the term cured. But as it stands now, it's lurking somewhere in the background. And what I like to tell my patients is I want you to forget about it for the most part, for the most part. You know, it's part of who you are.

Barbara Pruitt

Right, right. Well, one other question from social media came from Kelsey. She said, I never considered that my platelets would have a hard time regulating after having my baby. I have chronic ITP and my platelets were a bit lower than typical during my pregnancy, but tanked postpartum. I'm now 14 months postpartum, still trying to regulate my platelet count. Why is this? And what can I do to support my platelets?

Dr. Gernsheimer

One of Edith's specialty is what happens to immunity and in pregnancy. i you know And so and I'm going to pass this off to you, Edith, but I'm just going to start her with pregnancy is a very funny disorder when you think about it because you are accepting graft of another human individual that is not you. I mean, the immune system would normally reject like anything that you tried to graft onto yourself, that it's not 100% you. And your fetus is not 100% you. And so your immune system has to play some really um snazzy games in order to accept that fetus as something you're not going to reject. And Edith, now gonna hand that off to you.

Dr. Cheng

But I think that's really the crux of the answer is that the fact that we are effectively transplanting something that is completely different from you and the pregnant individual must shut down its immune system enough to not reject your baby but also protect you yourself from diseases. It is the, and the dance is enormous at the genetics level. It's just crazy, totally crazy when we were just beginning to maybe unravel just the first of a gazillion steps and understanding what it might look like. I'm not surprised. that there is still some struggle with that. We see that not only in in um ITP, but we see it in other conditions. We tell our patients that some of our rheumatological disorders have the same situation where the that they struggle during the pregnancy for, you know, with an increase in flares of their disease or improvement, perhaps because the immune response has kind of like shut down their disease. We also know that for autoimmune conditions, we expect a flare after pregnancy. About 30% of women with autoimmune conditions will have a flare during postpartum.

Barbara Pruitt

And then does it usually then correct itself and with time or you just have to wait and see?

Dr. Cheng

You just have to wait and see.

Dr. Gernsheimer

You know, I think with ITP, because it gets worse during pregnancy almost always, honestly, everybody expects it's just going to get better. And, you know, oh, no longer pregnant. So now, and it does frequently. Frequently, we're lucky enough that it just kind of like goes, particularly women, not always, but women I've seen who got it for the first time during pregnancy. You know, frequently they'll get better and then they get pregnant again and they have kind of that pattern. But, you know, I've also seen ITP get worse just like this. And one of the things we and it makes me recall patients. And one of the things I think we have to be really careful of is we're now talking about a woman who's postpartum and is at risk of all kinds of problems postpartum, which includes postpartum depression. And we throw around a lot of steroids when ITP is um unstable. And so, I mean, one of the things I always tell hematologists is you know, be very careful with those steroids postpartum, either taking them away too quickly, or if there's a big flare afterwards, you know, throwing too many at them because um emotionally, a woman is going through a lot of hormonal changes that can set off all kinds of psychiatric problems. So, we all know what steroids can do to us. so

Barbara Pruitt

Well, that's a very good point to make. I have to say that we have talked about an awful lot as far as ITP and pregnancy. Some of these topics we've touched on could be very frightening for a woman that has ITP and is considering getting pregnant. But I know in my past conversations with you, Dr. Gernsheimer, as far as advising a woman with ITP, should I, should I not get pregnant? You've always had a very optimistic outlook, which I love.

Dr. Gernsheimer

You should get pregnant, but only if you want to. And that's the way I mean, I think I said it earlier in all those years of practice, all those decades of practice, I have told exactly two women, please don't do this again.

Barbara Pruitt

And that's after they've done it once.

Dr. Gernsheimer

Yeah. Yeah. Or sometimes twice, you know, and it's just like, you know, ah you know please, you've got two healthy babies. Let's just quit while we're ahead because we've had so much trouble and I want you to be safe to take to bring up these babies. I mean, that's in, you know, again, that's in decades. And Edith, I don't know if you've had the same experience, but, you know, I never tell a woman they can't get pregnant.

Dr. Cheng

There's actually very few situations actually in in OB in medicine or in MFM in medicine that I have, you know, been very clear that pregnancy would really truly, truly endanger life. There are conditions that do that. And, you know, we have to be honest when we're honest about that. I don't think that ITP falls into that category, especially with the resources that we have. And again, you know, some of the main points here is, you know, the earlier, the better in terms of seeking your care team and getting information and getting informed. We have resources to support you through a healthy pregnancy for yourself and for your baby. There's experience and there's data to say that. So I don't think, you know, Terry, I think that the patients in whom you've said those things to probably are shared with me and you and I kind of would have agreed, right?

Dr. Gernsheimer

Yes, it has always been. This is not just my decision ever to make. It's sitting down with the obstetrician and saying, you know, can we do this safely again? and you know, I mean, it's scary for all of us. We don't want to lose our patients. We don't want to lose the baby. And you know some; but again, it's so rare that i would even that it would cross my mind to say, no, we're not going to go through this again.

Barbara Pruitt

Now, what would you advise our listening audience? You know, they may be in a rural area in the center of the country or wherever. What would you tell them? how do How do they find a good obstetrician that handles cases like this or find a hematologist that's familiar with pregnancy and ITP? I mean, are there websites to go to or what would you recommend?

Dr. Gernsheimer

Well, I'll say for hematology, there's PDSA. And that's the place to go to ask. And some of the people at PDSA, some of the physicians at PDSA will also be able to send them to a good obstetrician. But I'm going to let Edith talk about how they could get a good obstetrician.

Dr. Cheng

From an obstetrical point of view, the most, and so PDSA, yes, to connect with hematology and at least get advice as to the hematology potentially experts within your region. Cause remember we now can touch our patients through telemedicine. So, so that's number one. Number two is that the most important thing about obstetrical care is that your OB provider, because remember it might not be an obstetrician. Remember we just talked about areas in which they may not be obstetricians. There are areas, you know we have a lot of issues right now in terms of access to care for women in general. And so we may be you know we women pregnant women may be receiving prenatal care from midwives, nurse practitioners, what it doesn't matter. But the most important thing really is that your obstetrical provider has access to experts that they can connect with. Okay. Because again, I'm going to go back to we have telemedicine. Okay.

Barbara Pruitt

Right. Right. And I think that's great advice. That's great advice. And as a patient, you really have to speak up. You have to be your own advocate. You have to ask questions. You have to continue to ask questions until you get the answers that you're looking for.

Dr. Gernsheimer

I mean, sometimes you don't have a choice, but if you're in an area where um there are obstetricians and you have several choices, but no high-risk obstetricians, find somebody who's willing to work with other people. You know, that that can be, you know, and the same goes for your hematologist. He may not be a specialist in ITP and maybe most of his practice in your area is with oncology. Look for somebody who is at least willing to work with experts in that area.

Dr. Cheng

And I, and I will say, you know, an obstetrician in a rural community or a midwife in the, you know, with seeing a, you know, having been presented with a patient with ITP and that patient for whatever reasons really cannot relocate to whatever reason, right. I am sure that that individual will welcome, right. The expert guidance, right. And I'm going to go back to saying we can provide the expert guidance through telemedicine. You know, we do that in our Washington community. We take care of a lot of high-risk patients in eastern Washington through telemedicine. You know, these are the labs I want you to get the next time you see her in the office so that I will be ready to consult with her through telemedicine so that I can guide you as to the next step, that I can guide you to the next step. And so at the end of the day, we, there's so many things that we have to be sensitive to. Our patients not necessarily, even though she may have critical ITP and blah, blah, you know, she may not have the gas money to drive over to Seattle to see us. So our job, is to collectively provide her with this high-risk care in her community as long as possible. Because she ultimately may need to deliver at a tertiary center, but we want to keep her at home until she has to come over. And that is what this collective group of experts will do for her and her family.

Barbara Pruitt

Which is wonderful. You know, I mean, it sounds like what all you're speaking about this collaboration with these experts. I mean, that's what you need. You need to have a healthy pregnancy. You want to be assured that you're covering all your bases, that you've got everything covered beforehand so you can relax, have your baby and enjoy the new life in your family. So thank you so much for all of your input today. This has been just a wellspring of information. I know that many, many women and husbands, partners are going to be tuned into this probably more than once. They'll listen to it again and again to get the information that they're looking for. And your advice and input is just invaluable. And thank you again. The PDSA thanks you and our listening audience is very appreciative.

Dr. Gernsheimer

Pleasure to speak with both of you.

Dr. Cheng

It's been fun. Thank you so much.

Narrator

How do you live your life with a bleeding disorder like ITP? From working in the kitchen with knives, to navigating sharp corners in your house, going out to eat in a restaurant, traveling on a plane, attending a sporting event, even dancing at a wedding. ITP patient Barbara Pruitt shares her tips and tricks for moving through life with ITP for more than 60 years. Here's her lifestyle lesson for the day.

Barbara Pruitt

Wow, this podcast on pregnancy was full of important information. But you know, it wasn't just for ITP patients who are pregnant. I think the biggest takeaway from this one was coordination of care. This applies to all of us that are ITP patients. If you've got ITP, no matter what your platelet count is, if you're facing surgery or a procedure, you need to let your doctor know that you have ITP, even if you're in remission. And no matter what your platelet count is, it doesn't do you any good to hide any medical information. As you know, our platelet count can change day-to-day. You want to avoid any complications. Your doctor needs to have a conversation with your hematologist to get his or her input and advice and determine if any extra steps need to be taken prior to your surgery or procedure. Remember, coordination of care is of the utmost importance. You need to be your own advocate here. You know, when people go into remission with ITP, gosh. That's where we all want to be, don't we? But when people go into remission, I get it. They want to just forget that they have ITP. I wouldn't blame them for a second. But you really need to be conscientious about giving your doctors the information that you have ITP, you're currently in remission, because Remission isn't a guarantee. We don't know how long it will last, and you can relapse at some point. So, it doesn't do you any good to hide that information from your doctors. So keep this in mind. You really need to let all of your doctors know that you've got ITP. And if there's a procedure or a surgery that's needed, be open and honest about it. Because you're going to go into that procedure or surgery feeling so much more confident that all your bases are covered, that you've done everything you need to do to have a successful outcome. So that's my lifestyle tip of the day. I hope it helps. And until next time, I'm wishing you lots of happy, healthy platelets.

Narrator

Thanks for listening to the PDSA podcast, Bruised but Not Broken, Living with ITP, made possible by our presenting sponsor, Amgen. Special thanks to Gus Majorga for composing our theme music. To see what's coming up, visit our website at pdsa.org and subscribe wherever you get your podcasts. Please share this podcast through social media with anyone who you think might benefit from the information and stories we share with the ITP and other platelet disorders community. As always, please speak with a healthcare care professional before making any treatment decisions. But know that PDSA.org is a wealth of information and resources to help you navigate life with ITP and other platelet disorders. Remember, you are not alone.