Quick note, this podcast is for educational purposes only and does not replace your medical advice. Check out our full disclaimer at the bottom. I'm excited

powerful for you guys, especially when we're talking about fear and the lack of predictability during pregnancy. And so today's guest is Paulette Kamenica. I'm saying it right. And she is an author. She's an author and she also has a podcast. So welcome, Paulette. Just tell everybody a little bit about you.

Trish, thanks so much for having me on. I'm so excited to be here. I love your show. I, as you said, I am an author and I have a podcast, what you didn't expect in fertility, pregnancy, and birth. And I write about pregnancy and autoimmunity and women's health generally. And I am again, excited to be here.

So maybe we can talk on that. Paulette and I were having a great conversation before we started recording, should have started recording prior, but that always happens. And we were just talking about her own pregnancies, but I want to preface this for you guys, cause I know you guys get freaked out and I tell you guys all the time to limit the horror stories or limit the scary things.

So I love The name of your podcast, Paulette. What? You didn't Well what is it? Sorry, what You didn't expect. Sorry. What? You didn't, yeah. Okay. I thought I was gonna say it I am very jet lagged you guys. So I love that because the truth of the matter is pregnancy is unpredictable. Birth is unpredictable, parenting is unpredictable, marriage is unpredictable, your job is unpredictable, everything in life is, and it really comes down to how do you navigate those things.

So Paulette, tell us your birth story, your pregnancy story, how you got to that.

Absolutely. So I want to preface this by saying also my story is a success story. Things went wrong that were entirely out of my control, and FYI, are out of everyone's control, and it totally worked out. So that is the good news, and I did learn some hard earned lessons on the way.

So we fall into the giant, unfortunate bucket unexplained infertility, which is, hopefully that's an evolving process and we have better and more finer tests to figure out what was going on. It turned out in my case, I had an autoimmune problem that I did not know about. And I, unlike Most people who get my condition are in their forties, mid or late forties.

You get sent around to different specialties instead of anybody looking at your body as one system working together. So we finally did get pregnant. We used an IUI, which, To give a sense of my sophistication going into this process, I was imagining that I would show up at the doctor's appointment and she'd have a turkey baster.

Yes, so it was a, not the information rich age we live in today, but, the IUI worked for us and we got pregnant. And I again, in this optimistic naivete, I thought whatever was causing the problem with the pregnancy is [00:06:00] now in the rearview mirror because I'm pregnant.

So I'm basically done is how I thought of it. I've crossed the finish line,

Trish: which turned

out not to be true. So the pregnancy in the beginning is like every other pregnancyI was a grad student at the time and I remember waking up in the computer room, like lifting my face off the keyboard and having the imprint of the keys on my face because that exhaustion in the first trimester is so powerful.

Oh my God. Yeah. , and that's by the way, for someone who had trouble getting pregnant, good news. You're like, something is clearly going on because I have face planted in a computer room filled with people. And this is not my normal. Yes, exactly. At about 25 weeks, I'm sitting at my computer as usual and feeling just weird.

Everything else looks fine. You're fine. Go home, drink water, come back on Monday. So I drank gallons of water and went back on Monday and it was not resolved. The heart rate had dropped lower. And so now I'm in a new bucket where something is clearly wrong. And ultimately within a week, we figured out that I had an autoimmune problem, which I didn't know about.

And my autoimmune problem was attacking the fetus.

Trish: And how did they diagnose the autoimmune?

They collect the, it was my collection of symptoms and it was blood work. So you have to have, even if you, I have Sjogren's syndrome, and even if you have Sjogren's syndrome, you have to make these very specific antibodies.

the chances of this happening to someone else are almost zero. The chances of it happening to me are almost zero. So it's a very rare occurrence.

Because when I got pregnant with Grayson, I had three losses prior to my pregnancy. I had time, four very successful in my early twenties when at my ripe and I did the research and I found out all the different labs that needed to be drawn and my doctor was very skeptical at drawing them.

And it was like, I'll tell you, it was a lot of labs, like 40 vials at once. And that's how I found out that I had a very weird clotting disorder. And that's what was causing the miscarriage. So I just want to interrupt really quick that we're going to talk about advocating and research and knowledge, but you're really lucky that they invest, obviously if some of those symptoms were happening while you're trying to get pregnant, I don't think back then they would have done as much investigation.

A hundred percent. Yeah. And actually in that vein, so we get this diagnosis, at 25 weeks and the baby's heart rate should have been 150 and it was 50.

Trish: as a labor nurse.

Yeah. It was scary to everyone. You could see that my, high risk OBs were pretty panicked. When we met the first high risk doctor, he said, we haven't seen one of these in 10 years. And we were in the city of Chicago. So it was a teaching hospital. You would imagine.

Trish: It wasn't like Gladeville, Tennessee.

And sometimes that doesn't work. Sometimes doctors don't want to talk to a patient that's not their own and give medical advice. And this doctor, I wouldn't necessarily say, She gave me medical advice, but she did direct me and tell me how she thought it would go and what would happen. And I am forever grateful to her.

She's a doctor in New York city. Jill Bayan. Thank you. And for the next 12 weeks of the pregnancy, we were just watching and waiting to see what would happen. The high risk obese were not optimistic that it would go well. At some point they put me on medication, which was scary and I didn't see this till later I got my medical records and the doctor had written that it was an experimental treatment and it wasn't that's not how it was Presented to me.

Trish: Oh, that's great informed consent right there.

Yeah.

And so I went on the medication. And I think they intended for me to have it till the end of the pregnancy. But after five weeks, I just, I took myself off.

Trish: so at that point you were 30 weeks when you took it off. Yeah.

No, they didn't start at 25. I was probably 32 weeks. Cause it took them a while to figure out what to do.

But I took myself off because the heart rate hadn't changed at all. And the medicine was supposed to alleviate the problem. And I was very concerned about birth defects. I might be causing, should we be lucky enough to have a live birth at the end of this? What's my responsibility to the fetus?

Trish: Yeah.

But one thing that the fetal cardiologist said to me that was really useful is She made it clear that no one really knew what would happen Everyone was guessing. So when the high risk obese kept telling me, we don't think she'll survive. That was fear more than an accurate prediction because we don't really know what would happen.

So to get through those 12 weeks first, my first, lesson was one day at a time. to make it from 25 weeks to

Trish: Listen up, mom, this applies to all of you.

25 weeks to we imagined 40 weeks is a long time to be panicked. So I literally just lived one day. I just have to make it through today.

I called home every single day to just hear his voice and have him calm me down and tell him, this is what the doctor said. What do you think? And every time I asked him, do you think this can still work out? He'd say, yes.

Trish: What an honor. Like, how amazing is that?

Paulette: Yes, he absolutely helped me survive through that process and so we get to 37 weeks.

The doctors are super excited We've made it this far and they have scheduled a c section Because the fetal heart is not responsive to anything

Trish: so it could not have handled contractions

so I can't have a vaginal delivery because if there's any issue with the fetus. You can't tell because usually you use heart rate as a

Paulette: Yeah,

Trish: so

Paulette: Yeah, that is useful context. So we plan a c section And I go into the hospital the day I'm assigned to go in, they picked my daughter's birthday based on an availability in the surgeon's schedule. And we go in, it feels like a business meeting. I have no contractions. I don't feel anything.

And the surgeon is standing over me to start the C section. And he says, I don't think this is what this one's going to make it.

Trish: Oh my gosh. Okay. Back up a little. Cause I want to talk about What you were feeling and thinking like the night before and the morning of and going to the hospital Where were you at mentally?

, So I was terrified

Trish: what about your partner your husband

My husband was equally. He was very freaked out. He is Midwestern solid, not super emotive and he was pretty freaked out we had made a, playlist for the vaginal delivery we imagined we were having.

And so we sat in the C section suite awaiting the surgery, making fun of our playlist. Yeah. Imagine, like who would listen to this stuff, right? This, I can't even imagine listening to this music.

Trish: And what a somber OR. I'm sure the operating room, everyone was afraid. To be excited or positive.

Paulette: I don't, I can't even imagine that.

But, so we get to the, or the surgeon says I don't think this one's gonna make it. He said that out loud to the team or to you? To, again, prepare us, that was said to me many like you hadn't been prepared for that thought. , I am ambivalent about how the team handled that whole thing and I don't have a better way to handle it.

I don't know whether they constantly reminded me they thought she wouldn't survive Because they were scared. They were scared and I wasn't sobbing. I went to all these appointments without my husband because I wanted to this is going to sound crazy, but I wanted to keep him clean.

Like this is such a huge emotional burden. I want someone who's in this with me that I can go back to who is not also carrying this, who can be optimistic., that was the thinking anyway. And was he? Yeah, I think hearing it from me is different than hearing it from the doctors. So I think they're again, trying to manage expectations.

Trish: Just do it. Let's find out for sure.

So they do the surgery. She is born alive. But her Apgar is like three. She's failing the Apgar test, which is

Trish: not the worst,

not the worst, but she doesn't look great.

And Unfortunately at this point the maternal hospital and the children's hospital were separate entities So she got ambulance to the children's hospital I'm in the maternal hospital for three days and my husband jumps in his car and follows the ambulance

So I'm alone. And the field cardiologist who was fantastic, had someone take a Polaroid picture and give it to me. So I had a picture of the baby.

Trish: Cause we didn't have the fancy iPhone.

Paulette: We did not have iPhones

Trish: there was no FaceTiming.

Paulette: There was no FaceTiming. And my husband went on the city streets of Chicago and found some kind of video camera.

to bring footage back from the baby's hospital. Yes,

Trish: that's amazing.

Trish: of 50.

Yes. And in the NICU, she looked a giant because six pounds is right. There's a lot of preemies. And so, but she, Had the open heart surgery. And as I was saying to you, and we spoke before we got on here, after the surgery, one of the doctors said to me, whether this child lives or dies is up to her.

There's nothing else we can do for her. And that was a really pivotal moment in my view of parenting and her life. I think it's so hard for us as moms to have these babies who lived inside us and were physically attached to imagine them as separate beings when they're small. And I'm getting that lesson.

Yeah. She was in the hospital for nine days after the birth and then we were released which also felt very quick

Trish: And let me just ask, once she had her surgery and all of that, how was she doing as far as her heart rate and all of that? Did it all normalize or was it still a struggle throughout her life?

So

they put in a pacemaker. So she'll need a pacemaker until we figure out how to make nerves, which we have not figured out how to do yet. So she had, that was her initial surgery. Now, she's a senior in college and she has had six surgeries since then. But the pacemaker solves the problem that my autoimmune problem created.

Trish: Yeah. And I want to go back to what you said about taking one day at a time that my husband says to me all the time when I'm freaking out because I'm a, I'll look at three months from now and what could potentially happen then.

And he's always what is the next best thing? What do we do next? What's the next thing? That's all we have to worry about is the next step. So I love that you said that because whether you're during your pregnancy or your infertility or your fertility or your parenting or whatever you're going to be faced with the unexpected And being able to do that say, okay, I don't need to worry about the next 5, 000 things What do I do right now?

If it did work that way, that would be super simple if you could actually predict what would happen.

Trish: Yeah. Yeah, I love that too because as you guys went, a lot of you guys are not yet pregnant or with really young children There comes a point where you do you're so concerned, but like you said it's at some point It's up to them.

You give them like the dot. What is your daughter's name? Grace you the doctors the surgeons the hospital The specialist gave her the tools to be able to survive, but ultimately it was up to grace. And that's the same in all areas of parenting. Like it's our job to provide them with the training and the tools and equip them.

But then we have to step back.

And I asked a million questions. One of my husband's favorite stories is that he followed Grace in the ambulance to the hospital and he met with the cardiac surgeon who put in the pacemaker. I wasn't there because I was trapped in the women's hospital. And the cardiac surgeon said, I've been told to expect a lot of questions.

What can I what can I tell you? And my husband has a totally different style and he was like, give him hell. Good luck. Yeah. Yeah. But that's great. You can ask him, it is your role to educate yourself. And part of that comes with asking your doctor questions and getting answers that make sense.

Yes. If you don't know, you're not informed. Yes. Period. Absolutely. Even if they said it all, you're not informed if you don't understand.

Yes. I would often say it another way with different words. I, what you're saying does not make sense.

Trish: Yeah. Yeah. No, for sure. And I always, it's so funny because sometimes I'm like, gosh, I think people are they just think I'm trying to sell my birth courses.

It needs to be legit. Do your due diligence and. That is in your control. And a lot of people, I was telling you this before we started, because a lot of and nurses I worked with, labor nurses I worked with, my goodness, would be like, Oh my gosh, I don't know why she has a birth plan. That's going to make a difference.

That just sealed her fate. She's going to go to the OR. And I want to be like, do you not think maybe it's your attitude that is sealing her fate? Not the fact that How, in any sense of the way, can you say that someone educating themselves for a life changing event means they're doomed? In what area of life does that make any sense?

Yeah. Ever. Absolutely. That's one of the really good points you just brought up is this is one of the few things you can control, is the information you're consuming. And that is an important tool to use to your advantage.

And the first part is the knowledge, but knowledge without confidence and knowledge with, is really not going to work well either, but then you have to have the right mindset, which it sounds like you were working on your mindset as well. And then the third part would be advocacy. Like willing to speak up because you can know all the things but if you're scared to speak up and Challenge or to even ask questions Then that knowledge isn't as powerful as it can be so it's really all three part

that's a super important point and I did I learned very early on in the pregnancy that Oh, this fetus needs an advocate and that's going to have to be me because there's no one else here.

So Yeah, that is a really important point

We help them Navigate, how do I say this to my doctor? My doctor said this. What do I do? We help them navigate all those emotions and unexpected things that come up which will forever for the rest of your parenting journey And then we also have our membership where we do the same with our postpartum moms as well and I think that part like can you imagine if you would have had a community?

What are the chances you actually know someone slim to none?

Paulette: Yeah. Yeah. I totally agree. So my father and the fetal cardiologist who, she was fantastic. Those two people for sure carried me through. That was my community because they were the people who had experience.

Trish: Yeah, I love that. We're in the middle of a launch right now.

We do something called Fearless Birth Experience four times a year. We have a private community for the registrants. It's free. And I was just in Telegram. They were all chatting. And I was watching them connect hey, I'm an IVF pregnancy. Oh, me too. And they're chatting. There's something so powerful when you're able to talk to someone Who knows exactly what you're going through, but you don't have to use a million words to explain it You can just they know yes, yeah

Paulette: There are a lot of things that defy the language to describe them for sure.

Trish: Yeah. Yeah, exactly so tell me about your next pregnancy,

We were thinking we were going to have a big family. A basketball team. Exactly.

Yeah.

And then when we had trouble getting pregnant, we were like, Oh, or maybe a golfer, we'll just have one. Yeah. But we really wanted siblings. And so it was, this is again, an issue with advocacy and education. My doctor said originally the high risk team said when they found the problem with my pregnancy This will happen in all your subsequent pregnancies.

This is a significant problem. We can't change it We can't fix it. Every time you get pregnant this will happen and I knew having done the research ultimately later that, that again, that was a guess. No, no one really knows. And I had been a graduate student in economics and I did a lot of work with data.

If you have Sjogren's, everything's too dry. So basically the sperm have to walk. To the up to the fallopian tube. So the IUI resolves that because it's cutting the journey. So we used that again and got pregnant pretty quickly. And you can imagine after having the first pregnancy, the second one has watched exceedingly closely.

We had moved. So we were in a different, we moved out to the Bay Area in California. So again, a big area, but different hospital. Yeah. And they watched us super carefully, which anyone who has a pregnancy that's watched super carefully knows it's not super fun. There's better things to do.

Trish: No, I always say that all the time.

It is a lot. And I didn't have to stay in the hospital, but I did have many appointments and lots of ultrasounds. And that baby did have some wiggliness, let's call it in the pregnancy.

Trish: No, once a c section, always a

c section. Yes. And I'm in the high risk group. And so they're not excited to add excitement to my birth.

And I had her. At 37 weeks and she was born healthy and then at three months, she, her head was growing too quickly. They do the little tape measure around the head to, so the rate at which her head was increasing was too fast for everything else. And that's landed us in the PICU at some point.

She had a massive seizure and that was another, a bit of a clown show. No one knew what was going on. And. The neurosurgeons were saying, we're going to have to bore into her skull to look around in her brain. And neurology said she'll never walk or talk based on the scans we're seeing. And other doctors said,

Trish: yes.

Other doctors said, Oh, she just needs more B vitamins. So obviously again, we're in the lap of uncertainty. Nobody knows what's going on.

Trish: Bore into her brain, vitamins. That's a wide range. So

So when I saw the rash at first I thought, Oh, did I use the wrong shampoo? What's Oh. And then I thought, Oh, it's the rash, but I didn't get it checked out because the rash resolves on its own. And ultimately it was found out it was another different. intersection with my autoimmune problem and my antibodies, which now everyone knows what antibodies are after COVID we're sticking in the membrane that covers the brain.

So fluid couldn't get in and out, which is why her head was expanding too fast. And the rheumatologist said, this will resolve on its own. Goodbye and good luck. So she is walking and talking, plays lacrosse and rose crew and was on the debate team. And she is a sophomore in college.

Trish: That's amazing.

And wow, that's a whole lot to handle.

Trish: too much.

Paulette: My, my immune condition and pregnancy do not get along.

Trish: Yeah, no. Oh my goodness. That's so much. And I know for those of you guys who are still sticking around listening and not freaked out such a rarity.

Oh,

Paulette: but the main, the condition with the second one, I think there are 11, they were at the time 11 cases known ever. Yeah. It's super rare. It's just a, I had a very aggressive autoimmune problem that I was being introduced to.

Trish: So your autoimmune disorder, there was 11.

Paulette: No, of the intersection of my autoimmune condition and this problem for a baby.

With her brain.

Trish: Okay. So 11. How many of those 11. Did they bore into their brain? You

And no one, seizures are not that rare. People have all kinds of unexplained seizures. Yeah, my son does. Yeah. As far as we can tell. Never had

Trish: a problem

again, as far as we can tell she hasn't had it again either but that shifted us quickly from,, dermatology to, , brain surgery.

, as far as we can tell that's, it's super rare to have this outcome. So this is like a 0 percent chance that anyone will have this.

And, the good news is that it is, resolves on its own.

Trish: At this point, for these moms, there's so much, there, there's a lot more access to information. Is there, has there been any advances in this? autoimmune disorder that you have or pregnancy with this autoimmune is there what's the, has anything changed?

for the first condition doctors now are performing and working on doing surgery in utero for kids who need pacemakers.

That's incredible. Unbelievable. Unbelievable. Yeah. And my second condition, it literally doesn't happen. It literally, it was a perfect storm of things that happened to co occur and put us in this weird circumstance.

Trish: So now when during the, I wonder during the infertility process, do they test for these autoimmune disorders?

Paulette: That's a really good question. I'm guessing they do not, but it probably not, but it would be really useful, right? To have some sense of. Of a wider spectrum of what's going on. Whether that should be done in OB or not, or who would control that, I have no idea.

Trish: Yeah, no. There's just so much unknown.

There, there's a ton that's unknown.

Trish: Yeah. For those of you guys who are listening, I'm so glad that you're here because I think, the important thing is how do we handle these unexpected diagnoses? Whether it's something as simple as finding out that you're GBS positive or you have gestational diabetes or maybe you find out you have pregnancy induced hypertension or whatever it is, there's Just remembering that you still have control in certain areas and asking yourself the right questions what do I control?

What can I do? What is my role in this? And like Paulette said one of the most important roles that you take on is advocating for this baby. And that begins in utero and continues for a very long time.

Absolutely true. And your case is unique in some ways, right? What's going to happen to you is not necessarily what they're reporting in the hospital.

Trish: Yeah, I love that you said that because I tell my students all the time and right now we've got this telegram chat for the fearless birth experience participants and one of them is saying, my doctor said that I have to be induced because of blah, blah, blah.

And this is one of my pet peeves because me with GDM, you with GDM and a 20 year old with GDM, we're all going to have different experiences. Experiences and symptoms and outcomes. And to treat us all the exact same because of a diagnosis is really frustrating to me. Super frustrating.

Start doing individualized care. If this mom has GDM, but it's diet controlled, she's in good health, the baby is passing the NSTs and the BPPs and doing great, don't induce her at 38 weeks because that's just what we do for GDM. No, come on, like it's so frustrating to me. It is

I found functional medicine, which is. A branch of medicine focused on getting to the root cause of a problem, which anybody who has a chronic issue can relate to the fact that mostly what you're doing is managing symptoms, which is a little bit frustrating, especially with autoimmunity. all the doctor really has done for me has changed my diet.

So it's not like I've done wacky things and it has made an enormous difference in my life in terms of my health and my autoimmune conditions and how I feel.

Trish: Yeah, and I know a lot of people get aggravated with me because I give the same answers a lot to a lot of different questions. One is what is the best thing I can do to stop being so scared about birth?

And it's those things are again, within your control. I don't say you guys can't have your candy bar or whatever it is that you want to have, but unless you're diabetic, don't do that. But you know what I'm saying? It makes so much sense that what we put into our body, is one of the most powerful things we can do to affect our body.

Absolutely. 100%. Yeah, I totally agree with that.

Trish: I'm so glad that I had you on here. We're getting close to 45 minutes and I know you guys listening, you drop off like flies. staying on here too long. You're busy. So Paulette, let everyone know where they can find you. I know you said you're an author, like just give everybody your details.

And you can find that everywhere you find podcasts.

Trish: Awesome. Thank you so much for being here today.

Hey there. Thank you for sticking around to the end. I had such a great conversation with Paulette and I hope you guys really listen to the key points, which is advocate for yourself, educate yourself. And don't always believe that the worst case scenario is going to happen. You guys have so much power.