Episode Transcript
[00:00:00] Jill Brook: Hello fellow POTS patients and marvelous people who care about POTS patients. I'm Jill Brook, your hyper adrenergic host, and today we are finally going to discuss a topic so many of you have requested Pregnancy in POTS, and our guest today is POTS pregnancy expert and Pot's Mama herself, nurse and doctoral candidate Kate Morgan, who has recently been first author on a wonderful, thorough article in the International Journal of Women's Health called "POTS and Pregnancy, A Review of Literature and Recommendations for Evaluation and Treatment."
Kate not only looked at the literature on POTS, but also Ehlers-Danlos syndrome, joint hypermobility syndromes, mast cell activation syndrome, migraine, syncope, autoimmunity, and other common POTS comorbidities. She basically wrote the journal article many of us have been waiting for. In addition, Kate is a registered nurse from Newcastle Australia, who is in the final stages of completing her PhD on POTS and pregnancy. Kate has been working in this field for the past eight years and has presented and published on the subject.
She is extremely passionate about empowering women to make choices about pregnancy with knowledge and information. Kate also is a POTSie mama herself with two small children who don't mind floor days when mom is wonky. I love that. Kate, thank you so much for joining us today.
[00:01:35] Kate Morgan: Thank you so much for having me. It's such a privilege to be on here and hello to all your wonderful listeners. It is a brilliant podcast.
[00:01:44] Jill Brook: Well, we are so excited to talk to you today because you are probably the world's foremost expert at this point on pregnancy during POTS, along with your co-authors on this article, Angela Smith and Dr. Svetlana Blitshteyn, and I'll just say I am not a mother, I have never been pregnant. So can I just start by asking you about the pregnancy experience like.
What was on your mind, or do you think the average person's mind when they find out they're pregnant? Like what are sort of the normal pregnancy thoughts and concerns, and then how does POTS fit on top of that?
[00:02:21] Kate Morgan: I think normal in air quotes people probably just fall pregnant. From what I've spoken to people about, they seem to fall pregnant and that's that, and they don't seem to have a care in the world. Whereas when it comes to people with strange and complex chronic illness like POTS and our associated comorbidities, we tend to be very, very anxious based on the little that is known based on knowing how weird our bodies can be, and we tend to plan a lot more.
So the falling pregnant part, finding out your pregnant isn't as much of a surprise, I don't think, in our community, because we've had to kind of be a bit more proactive in planning.
[00:03:08] Jill Brook: That makes a lot of sense. So is that what made you decide to write this article and your doctoral thesis on this topic? Sort of the anxiety and the unknown.
[00:03:19] Kate Morgan: I actually was influenced, When I was in my final placement of my undergrad degree, when I was learning to become a nurse, I was working in the NICU and I looked after this baby that came in, and the baby was perfectly fine, perfectly healthy, but the mum had this weird condition called POTS that no one knew about and she couldn't sit up.
She just kept passing out. And she was in the neuro high dependency unit while she was recovering and I remember so clearly the obstetrician came in and was complaining about this selfish woman who decided she'd have a baby, even though she was so much hard work and she's got this weird condition and how dare she and blah blah.
And it was truly disgusting. I had no kids at the time or anything. But I was so disturbed by how this doctor, this health professional, was judging this poor woman for a health condition. That sure was weird at the time. I had no idea what it was. But how dare she judge a woman for wanting to have a baby and then punishing her by keeping the baby away from her when there was no reason to.
So I convinced one of the fully fledged registered nurses, midwives to come with me, and we took the baby round and the look on that mother's face, I will never, ever forget just the joy of being united with her baby for the first time. It gives me shivers even now thinking about it. And that was 16 years ago.
So I just thought. What is this weird condition? So I was always interested in these strange niche things, and I had just looked into it more and I became really interested and I guess passionate about trying to make sure that women have choice. And it wasn't until the end of my new grad year as an nurse, so a year later, I was diagnosed with POTS myself, so it became even more relevant.
[00:05:20] Jill Brook: Wow. So you were an advocate for POTS before you had POTS yourself. That's not that common. Thank you.
[00:05:27] Kate Morgan: Yeah, I'd already heard about it and my diagnosis journey took only six months, which is, a breeze compared to most. And I had the one cardiologist who was fabulous, and in the end it was a collaboration between he and I because I'm a cardiac specialist nurse. So we kind of worked together to figure it out.
And it was only, I guess because I'd seen this woman and looked up what this weird condition was that it made me think maybe we should test for that.
[00:05:57] Jill Brook: Wow. Well, thank you so much for kind of now paying it back to the community so much with this work that you're doing. So you're a cardiac specialist and that makes sense. Your paper starts out by discussing some of the normal changes that happen in a pregnant body. Some I think that are cardiac and some that have to do with blood, but that might also affect POTS. Do you mind talking about those normal pregnancy changes?
[00:06:25] Kate Morgan: So pregnancy is really interesting in and of itself because our normal changes that happen to everyone that falls pregnant can actually mimic symptoms of POTS. So it makes diagnosing POTS in pregnancy or POTS that begins during pregnancy really difficult. So in normal pregnancy we end up having our blood volume increases because we need to have more blood volume to go to the.
We have the blood pressure lowers, we end up with a slightly higher heart rate. So it's really common for healthy, normal women to get palpitations, to get dizzy, to get lightheaded to have POTS kind of symptoms. That in itself is really interesting when we are looking at the symptom course for women who have already been diagnosed with POTS when they're pregnant, because the symptom course is fairly similar to that of a standard pregnancy because you'll get possibly more nauseous, you'll be getting more fatigue, you'll be getting pain, you'll be getting lightheaded, you'll be getting all these kind of normal symptoms that any woman could get.
[00:07:36] Jill Brook: So if I could dig in a little more. So you get more blood volume, that sounds kind of helpful for POTS. Does that end up helping the head and the heart as well as the uterus.
[00:07:45] Kate Morgan: in some cases, yes. Some women feel better in first trimester. And certainly as pregnancy goes along Second trimester tends to be the most favorable because your blood volume has increased, your body's kind of adapted to having a baby on board and you're not so big that the load is then actually not being so good. It starts increasing the first trimester, things tend to level out in second trimester, and this is fairly similar for normal pregnancy. And then in third trimester, as the baby's actually getting a lot bigger, it's using up more of the mother's resources. Everything gets more exhausted, get more fluid retention.
In some cases with POTS, that can be a good thing. Particularly if you're a low blood volume POTSie in some cases it's just way too exhausting and the fatigue is something else. And it's interesting having personally experienced pregnancy and POTS at, different times as well, but talking to my participants, the kind of fatigue you get in pregnancy is different to the fatigue that you get with POTS.
[00:08:55] Jill Brook: Oh.
[00:08:57] Kate Morgan: and that was something that I hadn't actually registered myself, but when talking to my participants, the fatigue with pregnancy people actually with POTS and the comorbid conditions actually found that more bearable because it was fatigued, that if you are feeling so tired and your feet were hurting and all that kind of stuff, you could lie down and get relief.
Whereas with POTS, it's that bone heavy, deep to your soul can't actually just function at all kind of exhaustion. That unfortunately, we probably all know well, if we're listening to this podcast.
[00:09:33] Jill Brook: Oh, that's fascinating. So I guess that was the only way to figure out the difference between the fatigues was to experience both.
[00:09:43] Kate Morgan: Yeah, it was pretty much all my participants said we didn't realize just how fatigued we were or the. Type of exhaustion, pregnancy gave them a whole new perspective of just, I guess, how sick we were and how different it's compared to pregnancy. And the majority of my participants actually reported psychologically feeling better about the whole thing in pregnancy because there was an end.
They knew that it was gonna end, that they knew that they could lie down and get some relief or sit up and get some relief or put their legs up and get relief. The whole psychology of it, knowing that it's for a finite period, knowing that there was strategies that you could do that were almost guaranteed to give some sort of relief, actually made pregnancy a pleasant experience in some ways.
[00:10:33] Jill Brook: That's fascinating. What else did they say?
[00:10:37] Kate Morgan: Oh, they said all sorts of things. If any of the women who participated in my study are listening, thank you so much. And thank you for being patient. To me it was such a privilege and an honor to speak with these women. They were incredible. And I learned so much from them. And the biggest message that came back from them was they wanted everyone to know that there is hope and they wanted everyone to know your doctors probably won't know much about POTS. They might try and tell you that it's bad, that you shouldn't get pregnant, that you're gonna die. I had one woman email me once saying that her doctor told her that she was gonna have a heart attack if she fell pregnant, like totally . No, no, no, no, no.
Not from POTS anyway. If you've got other comorbid conditions, that's a whole different thing. So they said, don't put it off. If you want that for yourself, don't be scared.
Don't let fear and fear of POTS and fear of what the judgments might be from others. Not only outside of our community, but within our community. Which I also found really surprising. Don't let that stop you from trying for a baby, because so many of them said that they put off pregnancy because they were scared, because they were afraid and they regretted that putting it off.
[00:11:55] Jill Brook: can you tell us a little bit more about this group that you spoke to how many people was it? How did you find them, that kind of stuff.
[00:12:04] Kate Morgan: So I have done a qualitative research study, which is the first of its kind coming out in our area. Not that there's all that much research on POTS and pregnancy as there is so, My research is all about looking at lived experience of what pregnancy with POTS is actually like. Hopefully our researchers and clinicians will be able to read that, get a better understanding of what it might be like for our patients that pregnant or thinking of pregnancy. And then our future research will be directed by the community that actually needs it. Because so much research, and I mean we need it. We need to know how POTS works. We need to know, all of that kind of stuff. But so much of that is so technical and will take so long to translate into clinical research.
Whereas the information from my research, we can translate now. It will be relevant now to our clinical practice to helping women now. So I recruited 10 women, which is fairly standard sample size for my type of research. And I think there was seven from the United States, two from the UK, and one from Australia.
I recruited online through social media channels Dysautonomia International and POTS UK were very kind and advertised for me, and I was overwhelmed by the response. I got hundreds of emails and applicants and I wish I could have taken everyone and heard everyone's story. It was so well received.
It was just, yeah, it was overwhelming. It was really validating that this is important. And from that, I conducted interviews with each of the women and then I have transcribed everything, looked at everything they've said both individually and then together as a group. So the aim of my type of qualitative research is to try and understand the essence of the experience.
So whilst I can't generalize as such, not everything that I've found that these women have experienced will be applicable to everyone. It is a really nice overview and from anecdotal evidence, from what I've spoken to hundreds of women about this off the record. I think this is a pretty good indication of what the general community is feeling.
[00:14:28] Jill Brook: So that's really interesting. Did you get a ton of variety of sentiments and experiences, or did you see a lot of similar experiences, especially since it was coming from different countries? I'm curious.
[00:14:43] Kate Morgan: The different countries thing was really interesting the way the United States deals with pregnancy just in general is so medicalized. I don't understand your healthcare system. It is confusing. There was a lot of unhappiness that came out of the healthcare system in particular and how that affected decision making and autonomy? In the states, whereas the UK and Australia, there still wasn't the information, but it wasn't as medicalized with birth. And I think the main thing that came back was the support. So if you have good support from a doctor, even if they don't know about POTS, if they're supportive and they listen to you and treat you like a person and if you've got good support around you, then your experience of pregnancy overall will be positive.
If you have a rubbish doctor who doesn't listen to you, who treats you poorly, who doesn't give you choice, who doesn't pay any attention. If you don't have that family support, friend support, then the overall journey was poorer. But nine out of 10 of them, despite all of this said they don't regret it. Which was really positive. And that's with the majority of women self-identifying as experiencing trauma in their pregnancy and birth. Which is really interesting because the current research that's out there tends to kind of read like we'll potentially have all these bad things happen, therefore pregnancy is bad and you're not gonna like it. And particularly on the message boards and online. People were talking about the online forums being really scary because it's the really sick people that tend to be on the forums.
[00:16:35] Jill Brook: Yes.
[00:16:36] Kate Morgan: Tend to be giving their horror stories, which then for people who are looking into pregnancy, read that and go, oh my goodness, I'm going to get this, this, this, this. You know, this is gonna happen.
[00:16:47] Jill Brook: Because the people who are fine are outliving their life and having a great time. They're not on social media.
[00:16:52] Kate Morgan: Exactly. And interestingly and this is something I hope that everyone will think about in their online practice, I guess as well as a community. It was really interesting that the women came back and said that it wasn't just the people outside that they were contending with the judgment that came with our online community because it's like the sickest of the sick online.
There was a feeling of when they felt better because of pregnancy or if they felt hopeful because of pregnancy and all of that. They felt like they couldn't express that online.
They were getting judged from within the community for not being sick enough. So then they tend to withdraw from the online platforms.
So that whole message of hope, that whole message of you can get through this, or it's a finite experience, or it's different, or no matter what happens, it's worthwhile if you really want a baby that was missing because of the judgment. A lot of the women talked about the change in identity from being a sick person, a POTSie, to experiencing pregnancy, to feeling better within themselves, to feeling stronger, to having improved symptoms, all of this kind of stuff.
And then feeling like they couldn't actually go back online, but they were still too sick to be normal. That's air quotes, normal. So they still had limitations, the POTS limitations that, we work around with lifestyle and, and whatnot, but they weren't sick enough to be considered sick on the online communities.
So hopefully everyone can just be mindful about that. And that really shocked me actually.
[00:18:32] Jill Brook: Yeah. That's so interesting. And it's too bad they're not finding kind of that unconditional support there, but can I go back to something that you said? You had mentioned that about nine out of 10 of your participants felt like the, the experience had been worth it. And it sounds like kind of a good enough, even though a lot of them experienced trauma.
Do you mind talking about that and then also, was the trauma because they had POTS or was the trauma just because there's trauma anytime you are interacting with hospitals and medical stuff, and was it any more than what you would expect in pregnancy in a person without POTS.
[00:19:17] Kate Morgan: Oh, that's really interesting. I'll start with part two first. So the trauma that was discussed ranged from just general, from what I understand, general healthcare issues. One woman described checking into the hospital being told she had to have an induction because her obstetrician wanted to go out and play golf on the weekend and feeling like she had to hand over all rights and control of her body when she walked through that hospital door.
I got the impression not having lived in the States with your healthcare system, but in this particular state, she was very big on advocating for other women. So then they didn't feel like that because it sounded like it was a fairly common practice. So we had that kind of trauma where it was the loss of autonomy, loss of control over your body, your choices.
You had to do what the doctor said when they said and birth, how they said right through to trauma because one woman had the really heartbreaking experience of just finding out that she had POTS and EDS, and not having the information, not being able to contact the specialist not being able to find out.
Partner was unfortunately away with work and couldn't be back, and the local hospital wouldn't speak to her and give her enough information, and she decided to terminate her pregnancy because she was so afraid of what might happen. but in that case, she still couldn't go to the local hospital because of the politics whatever at that hospital. So she still then had to drive an hour away by herself to deal with this. And that is really heartbreaking to think that she tried to get in contact with people that could have given her answers or could have supported her along the way, but she had to make that choice because she didn't have that support.
[00:21:21] Jill Brook: Wow.
[00:21:23] Kate Morgan: We also had trauma from medical things where women weren't believed. They had a subluxation and all sorts of things, and doctors saying, no, you're not supposed to get pain like that till your third trimester. And they're going, well, why have it? And it's like, well, we don't believe you.
Or women who really needed extra fluids that were denied it or were frequent flyers and judged for that. I know at least in Australia, that's a big thing and I'm pretty sure that's everywhere. If you turn up to emergency, yes, I really need more fluids. So we had that kind of trauma and then we had trauma in birth fairly standard traumas in birth where we had hemorrhaging, we had emergency deliveries. We had babies go to NICU and things. And when you look at the literature, in my first systematic review we did look quite a bit at the adverse Situations and complications and there is a long scary list of things that might happen, but we don't know if it's anything to do with POTS.
A lot of the things on there could also just be like normal, healthy women also can experience it. Pregnancy is so random, it doesn't discriminate. You can be the most healthiest, fittest person and have a really terrible time with pregnancy, have all the complications, have a traumatic, fully assisted birth, or you can be the sickest person and do brilliantly through pregnancy and ended up walking and running miles. And that also happened with a couple of my participants. They went from being almost bedbound, unable to work and after pregnancy were feeling brilliant.
[00:23:01] Jill Brook: Really, so it's almost like pregnancy made their body learn how to do something better. And they were permanently improved after pregnancy.
[00:23:12] Kate Morgan: I don't know how permanent it is.
[00:23:14] Jill Brook: Okay.
[00:23:15] Kate Morgan: but there's some interesting thoughts about it and our current article discusses it a little bit with breastfeeding because it increases the hormones are still increasing your blood volume and fluid retention, and that is breastfeeding. part of why symptoms seem to be kept at bay, cuz we certainly found that, and I know personally when weaning, that symptoms kind of come back, but they don't necessarily come back as bad as they were. There's some thought about that the baby has more of a schedule, so the mother can rest while the baby is resting.
And again, that comes with really good support because if you don't have that good support, it's almost impossible to rest while the baby rests. But having regular rest for your body actually helps. Breastfeeding and thinking more about drinking more water tended to increase fluid consumption, which we know helps.
There's some thoughts about just the physicality of picking up a baby, increasing that upper body strength and stamina and things like that can be positive. It could just be thinking about something else. But we don't really know why. I know for my own pregnancies, after my eldest was born, I had a very traumatic birth.
And I was really, really, really unwell for months. But after my son was born, he also was an emergency birth, but I was the best I have been like my whole life kind of thing that I can remember for about nine months after he was born.
[00:24:52] Jill Brook: Nine out of 10 thought it was worth it despite having some trauma. And so overall it sounds like people had pretty positive experiences. I guess I'm wondering like what's the baseline? If you took 10 women off the street who have no health problems, how many of them would say that the pregnancy had gone well and been worth it? Would it be pretty similar?
[00:25:18] Kate Morgan: I dunno. I think that probably most normal, healthy people. They seem to just, yeah, get on with it. Focus on the baby. They don't seem to be too hung up on trauma. I think it's probably not as appreciated as much in the healthy population. Nor do I think they plan so much. I think we as a community are very good at planning our own health.
We're very good at thinking, what can I do? What can I not do? How many spoons we've got at the beginning of the day, how am I going to use my spoons? So that's a brilliant analogy. But yes, so I think we plan a bit more and a lot of them talked about just being so grateful and, really realizing and embracing health, whatever that looks like in any state, and talking about how this new being has changed their perspective on things. That really kind of changed the way they saw it. I mean, one woman described it has been like all of a sudden there was color in the world that she didn't realize wasn't there, and she said, if you've never had a baby, you dunno what you're missing out on.
And that's cool. she had a baby and all of a sudden everything was just so much brighter, so much more real. So much bigger than her that she just felt so grateful. I had another woman describe her as a golden glow which, oh, it's another phrase that gives me shivers kind of thing. It's one of my ones that are stuck on my wall actually.
And she talked about it. That whole idea of this golden glow, like you can kind of look at things and it's kind of, that bit fuzzy around the edges, but the focus is just on the really important things. And it seemed that it's that mindset change or really you go through things.
I think part of chronic illness, we really do start to realize just how I guess health is such a privilege. Like not, not everyone has it. You don't earn it. You don't just get it ... It is a real privilege and that we really do need to make the best of it while we've got it.
So women really started looking at things of going, well, I'm gonna enjoy this as it is, and who am I and what is my value and what is my worth, and what can I bring to the world? Which was another really interesting finding. So the idea of what makes something good is really quite nuanced, because if we only look at the hard data and the stats, we'd probably look at it and go, eh, it's not real good.
Or, no, this is too risky, or not a good thing. But as humans, we are not black and white. We are not just trauma or we're not just sickness, or we're not just happiness. Like it all comes together. And the overall, bit it's really hard to explain, articulate, educate, like, try and figure out what it is. But overall, it was really positive.
[00:28:14] Jill Brook: That's so good to hear. Now, I know that you did a really thorough literature review of what other studies or data was out there about not only pregnancy in POTS, but also some other comorbidities. Is there anything else we should cover about POTS before I ask you about some of those comorbidities? Any other important findings you think?
[00:28:43] Kate Morgan: I think the main thing is, Don't assume that you're going to need to be high risk. I had one incredible lady say that her doctor sent her to the high risk obstetrician who was not interested in her at all, and she said, that was brilliant. I did not want to be of interest. I just wanted to be boring and sent away. Because when it comes to health, you don't want to be the weird. She was very, very ill and she was the weird case with lots of things. She was POTS and Emmy, and I thought that was really lovely. So don't just assume that you have to be high risk if you have a good doctor, even if it is just your GP or primary physician.
If you have a good supportive doctor. You're gonna be good. And don't assume that you're going to need to have a cesarean, and that's something that the old literature kind of recommended right at the beginning because we didn't know much about it, there was that recommendation that maybe we should be having cesareans.
There is evidence that you can have a natural birth. There's evidence that you can have a non-medicated birth and birth completely naturally, and still be okay depending on your symptoms. So don't think that you have to have a cesarean Cesareans really should only be done for obstetric reasons. POTS is not one of them.
The only other big thing really is medications. Don't be afraid of taking your meds if you need them because if you can be well and stable as the mother, your baby will do a lot better growing inside of you, even with some meds on board then if you go off all your meds. And certainly we've found in the literature and in clinical practice that women who don't need medication before they fall pregnant tend to not need medication. Women who do need medication before they fall pregnant do far better staying on their medication, and particularly when it comes to syncope and fainting the research it's often overlooked.
In our article, it's a little bit scary when it comes to fainting. So stay on your meds if you're fainting, cause fainting and the baby don't do so well together for lots of different reasons. But again, don't let fainting put you off trying for a baby if that's what you want to do.
[00:31:05] Jill Brook: So it almost sounds like as a POTS patient going through pregnancy, you kind of just keep doing the same things you are always doing. You try to stay hydrated, have a good support system, find good doctors who actually listen to you and stay on the medicines that help you. And, and I guess probably people might be wondering, do the POTS medications tend to be safe to take during pregnancy. And what I'm hearing you say is that the POTS medicines tend not to be the ones that are contraindicated during pregnancy, or does it depend
[00:31:42] Kate Morgan: It depends. So Ivabradine is a no-go. Definitely don't take Ivabradine, but propranolol is the best beta blocker. It's been around since forever. So some of the beta blockers are better than others.
Propranolol has the best profile. So some meds will be better. You might need to do a switch a cross. For me personally, I had to come off Ivabradine. We came off fludrocortisone. We messed with my propranolol doses until I could function again. But they're all kind of things, and the participants shared this as well.
When you have POTS, when you have chronic illness, you get so used to thinking about these things and planning. So people tend to go and have that preconception, whereas a normal healthy person tends not to, you tend to go to your specialist and go, Hey, I wanna have a baby. Hopefully our specialists will come round to the idea of asking women as well.
So if you are 15, 16, 18, 25, however old you are, when you are diagnosed, if your specialist can say to you, do you think you'd like to have babies in the future in the near future? And you're saying, well, yeah, that's kind of what I wanted. Then they can start you on the pregnancy safe meds to begin with instead of starting on things like ivabradine and then having to come off it.
That was one of the things that women actually found really hard and express that if they could have just been on the right meds, it would've been one less trauma. because it was like having to start all over again. And the delay it takes, like it took a year for me to get onto the right meds. And other women expressed that kind of long period of time too. So it's almost like you're being forced to delay what you wanted to do anyway, just because you're meds.
[00:33:25] Jill Brook: that's a really good tip. Try to get on the right meds first
[00:33:29] Kate Morgan: yeah. So if you are newly diagnosed or if you are thinking you want babies in the next few years, speak to your doctor now about trying to get onto the right meds now cuz there are lots of good meds that are safe with pregnancy.
[00:33:44] Jill Brook: Okay, great. Anything else about POTS before we move on to say like migraine.
[00:33:49] Kate Morgan: No, not that I can think of.
[00:33:51] Jill Brook: Okay, so what did you find when you looked at migraine patients who are pregnant?
[00:33:58] Kate Morgan: We found that sometimes migraines get worse, and sometimes they don't. I feel like everything in this area is sometimes it gets worse and sometimes it doesn't. So, I presented at a conference once and they were all asking questions, and all I can say to you is we don't really know.
[00:34:15] Jill Brook: But that's kinda encouraging because I think some people out there are like, is my head gonna explode? Cuz that's what it feels like. But no, they're gonna get worse or they're gonna get less worse.
[00:34:24] Kate Morgan: You might get worse, you might not get worse but if you get regular migraines, talking to your neurologist beforehand about different medications and different strategies is a great idea and definitely recommended.
[00:34:39] Jill Brook: Okay. Super smart. I think this next one is a big concern for people, Ehlers-Danlos syndrome or hypermobility spectrum disorders. What did you find when you looked at that and pregnancy?
[00:34:52] Kate Morgan: So EDS is probably the one comorbidity or the one condition that you do need to be far more thoughtful about. There's some fantastic research by Dr. Pezaro and her team on EDS in pregnancy. There's special considerations for pregnancy and labor with hypermobility spectrum disorder. Because of the increased stretchiness of vessels and ligaments might end up with more pain, your body might not actually be able to carry the baby like physically.
So some women end up in wheelchairs just because the weight of the stomach. and the laxity of the joints and the skin is just too much. There is some potential risk of increased bleeding because of the fragileness of the tissue and the vessels and the skin. There is some evidence that you might have a quicker labor, which can cause some issues.
Vascular EDS definitely needs very close monitoring and it's the one type of EDS that you should definitely be talking to a specialist before you even consider pregnancy. And that's probably the only condition that I would really say that I have big warning signs up of. If you've got that, doesn't mean you can't have a baby. Just means you really need to go and speak to your specialist first and find out for your situation.
[00:36:20] Jill Brook: Mm-hmm. And to be clear, that's just one of I think 13 different kinds of Ehlers-Danlos syndrome. So if you are somebody out there listening, usually it's the hypermobility Ehlers-Danlos syndrome that goes with POTS. And it's way less likely that you have this kind. But if you have it, definitely talk to a specialist, is what I'm hearing.
[00:36:41] Kate Morgan: Yes. If you have vascular EDS, you will definitely know about it. If you dunno what type of EDS you have, speak to your specialist. But if it's vascular, they usually are very, very clear about that because it has a whole bunch of other issues that come along with it. Hypermobility, it's more just the extra pain. And things like that.
[00:37:02] Jill Brook: Some people might think it might be easier to give birth with hypermobility, like you don't know. Maybe your hip bones just kind of get out of the way and your skin stretches and it's easier, but that's not the case.
[00:37:14] Kate Morgan: Well, I guess it could be, but there's actually some guidelines for the management of pregnancy, birth, and postnatal recovery in process. So chat with your doctor about that to see if they're out. EDS society I think is all over that, so there's definitely resources out there. but because there is so many different types in the spectrum, definitely speak to your doctor. But overall, you'll be more stretchy and there's a few more considerations.
[00:37:43] Jill Brook: Mm-hmm.
[00:37:44] Kate Morgan: But again, it doesn't mean you can't have a baby. If you want to, it shouldn't put you off.
[00:37:49] Jill Brook: Okay. Can we move on to ME/CFS and if there's anything out there about that in pregnancy.
[00:37:57] Kate Morgan: There's a little bit and the information that we found or the information that's in the studies is kind of similar to that of POTS. We don't really know very much. You might get better, you might not, you might get worse. You might have higher risk maybe of miscarriage. And that again, is with POTS.
And that again is a big question mark about whether or not there is an higher increase or whether it's just been the very small populations that have been studied because we don't have big data. But yes, there's not a lot of information about it and you might get better, you might not.
And yeah, ,so this is pretty much the advice across the board.
Certainly I had some participants that had comorbid ME/CFS and they had varying experiences. So some of them felt a lot better, some of them felt super fatigued. But as I was saying before, they felt pregnancy fatigued as opposed to their chronic fatigue syndrome kind of fatigued. So it was that fatigue where they felt they could get relief as opposed to the awful fatigue of ME.
[00:39:10] Jill Brook: Okay. What about mast cell activation syndrome?
[00:39:14] Kate Morgan: mast cell and autoimmune is really interesting. There's basically nothing on mast cell and pregnancy and in the autoimmune disorders, there is a little bit, and autoimmune is really interesting because in some cases when you are carrying a baby, the fetus is an unknown part.
You know, it's an invader in your body, so your immune system has to lower down so you don't reject the pregnancy. So some people have actually found that their autoimmune condition completely disappears and they're cured kind of thing. Some people find that it makes things maybe worse, maybe better
Like some people have remission and then they relapse again. Some people just have less issues. yeah, in autoimmune conditions, there has been noted a high miscarriage and stillbirth rate particularly with any phospholipid syndrome and lupus and things like that.
But generally speaking, you might get better. You might not. Speak to your specialist for your individual condition. Yeah.
[00:40:29] Jill Brook: So this all sounds like pregnancy is a huge adventure and you just cannot predict, and that's probably why you need the good support.
[00:40:39] Kate Morgan: Yes. It's one big unknown, but interestingly, my participants were saying, because POTS and chronic illness is such an unknown, anyway, we're kind of used to going with the flow in a way. So that also kind of made pregnancy in a way less stressful because we are used to not really knowing to kind of planning, but being open to changing our plans at the last minute because our bodies do weird things unexpectedly at unexpected times.
So they kind of felt the whole adventure of pregnancy and what might happen was not as much of a big deal as perhaps a healthy, normal person that hasn't experienced any of these stuff before because we're just kind of used to it. So it's like the sleep disturbance, the being dizzy and all of that. We are prepared. That's life. You know, pregnancy's not a big deal when you are used to feeling nauseous all the time. Yeah, I mean really in that way, POTS is great preparation for Parenthood.
[00:41:39] Jill Brook: Hey. All right, , that's encouraging. Do you have any other advice or tips or suggestions for POTS patients before, during, or after pregnancy?
[00:41:54] Kate Morgan: Well beforehand, definitely find your specialist, find your most trusted doctor, and if you don't have any decent ones, go and find one that you actually like. And, and plan as much as you can. Prepare. Make sure your supports are in place. Make sure that you know that the next nine months or however long your journey is could be very up and down. It could be that you're bedridden for nine months. It could be that you are off to the gym and doing all sorts of crazy things. Just be prepared for the unknown which again, I think we're fairly used to, and remembering that it's a finite experience during pregnancy.
It's just that making sure you're keeping up with the water, keeping up with the supports, keeping up with eating healthy as much as you can. And that's all general pregnancy advice. And don't be afraid of your medications. If you need them you're better off taking them. And if you can see speak with your obstetrician or your midwife.
But if you can talk to an anesthesiologist or anesthetist before you go into labor to see if you do need extra support there, that's really helpful. And that help lets the team know what's going on. And the anesthetist, if you have an anesthetist, they're the ones that are watching your blood pressure, they're watching your heart rate, they're watching all your vitals while you are giving birth.
So if they know what's going on and they know about POTS then you're in good hands. And if you can try and breastfeed because it seems that breastfeeding is positive in keeping POTS symptoms at bay. But in the end, a fed baby is best and anyway that you can feed your baby and bond and have that experience is great.
And just remember that you are not your condition. Don't let POTS and chronic illness control you. Take away something that you might really want. And if it means that you know your mom or whoever moves in for six months after baby's born, then that's great. If it means that you have bed days. One of my women described, having bedtime and she would just play and love her baby lying down on the bed. brilliant!
If you're breastfeeding, feed lying down, it's like the best thing ever. .So yeah, go sleeping and feed, feeding, lying down. Super helpful. But you know, if breastfeeding is too hard, if it's too taxing on your body, then get somebody else to help feed and they can do those feeding shifts.
Never think that you are not a good enough mother because you're not there 24 7. If you love that child, no matter what state you're in, they will love you. And that's all that matters. Doesn't matter if you're lying on the floor and they're playing. Had another lady talk about when she had really bad days, they'd go into a playroom, they'd have snacks, water supplies, she'd block the door so the child couldn't escape, and they would just lie and play on the floor all day, and that's all they need.
They don't need you to be running around. They don't need you to be doing all this crazy stuff. You don't need to be doing all the stuff that you see on Instagram or movie stars or in any of that kind of stuff. Just love your child and know that you have value. You are worthwhile, and you are the best mom you can be.
[00:45:17] Jill Brook: That's beautiful. I'll let that be the final word. Kate, thank you so much for talking to us today. I know that I speak for the entire POTS community when I say we so appreciate the work that you've done and the care that you bring, and we're just really excited to have your brain power researching this for us. And I'm sure that a lot of listeners feel very encouraged by your empowering message, so thanks a million.
[00:45:43] Kate Morgan: You're most welcome and if anyone ever wants to talk about this, just send me an email and I'm more than happy to get back to you or reply. And just remember, I have POTS, so sometimes I'm a bit dodgy.
[00:45:56] Jill Brook: That is so generous of you, and we're gonna put your article in the show notes so that everybody can find it and they can track you down that way if they are wanting to connect with you. So okay, listeners, that's all for now. We hope you enjoyed this episode. We'll be back with more next week. In the meantime, thank you for listening. Remember, you're not alone, and please join us again soon.
