Hello, and welcome to the podcast today. You know, throughout generations, we have learned from the people who have gone before us in parenting. And it’s really important for those who have been through it to share and those who are entering parenting to, to hear and learn from these stories so that you can take stuff from it.

And my guest today, Paulette Kamenecka, a writer, economist, and podcaster, has an absolutely stunning story to share with you that you will be able to learn so much from. So welcome, Paulette. Thank you so much for being here.

Thanks so much for having me on the show. Very happy to be here.

Good. So why don’t you start just by telling us a little bit about yourself?

Sure. I went to school for economics and thought I would do that forever. And I did that for a little while and then had kids and that part of the story of the kids, you’ll hear right now, that sort of interrupted the, where I was headed in that direction.

And I did that for a little while. And then I became a writer, which was something I wanted to do when I was a very small child forever. So I’m very excited to be a writer. And I have a podcast called what you didn’t expect. Infertility, pregnancy and birth and basically what it does is look at the gap between what we expected would happen and what we actually experienced, which it turns out for everyone large and small, is something. There’s a gap.

Yeah. I think everybody who just heard you say that can relate to that statement. Even if you’re two days pregnant, you can relate to that statement. Yeah. Tell me about it. What happened? Yeah. So for the first pregnancy, we, we had trouble getting pregnant, um, which was a surprise. Surprise. Number one, I imagined, which I think most people walk into pregnancy thinking, you know, as soon as I have unprotected sex, I’ll be pregnant maybe because that’s the story we hear,  you know, growing up.

Right, so that was a surprise, but we did eventually get pregnant, which was very exciting. And 25 weeks into the pregnancy, we stumbled on a problem for no apparent reason. I felt a little weird. I went in to see my OB and she found that the heart rate was a little low, the fetal heart rate. And she said, Oh, lay down and drink water and come back next week.

And I did that. And I came back next week and the heart rate dropped a little more. And so what it turned out to be was this very rare heart condition that threatened the life of the fetus at 25 weeks. So her heart rate should have been about 140 beats per minute or something, and it was 50. Oh, wow. And so, we had watched it go from 140 to 50, slowly not really knowing what we were looking at.

Right. So, we were immediately pushed into a maternal fetal medicine high risk practice.  And those doctors, we were in Chicago, so for three years. Largest city in the U. S. at a teaching hospital and that I’ll never forget that doctor walked up to me and he looked just like one of the doctors on ER at the time that show that everyone was watching with Julian Margulies and George Clooney.  Yeah, so that was a little disconcerting. But anyway, he walked up and he shook my hand and he said we haven’t seen a case like yours in ten years Oh, no, and I thought okay.

Well, it’s been great meeting you. I’m gonna I’m going to go find someone who has seen a case like mine. You know, it’s rare. So no one has seen a case or very few people. And you know, it’s very hard to have a rare condition is what I learned over time. So they thought it was life threatening for the fetus, but if they took her at 25 weeks, she’d be a preemie with a life threatening heart condition.

And so we had decided to roll the dice and see where it went. And there was a lot of, uh, what we basically did was watch and wait. And there was a ton of watching and waiting for the next 12 weeks. What did you do during that time? Did you, were you on bed rest or what did they say? No, I was released back into the wild to, you know, act like a normal person, but that did require two appointments a week with a fetal cardiologist, which I have to say.

I was super lucky to not know those people existed. I loved my field cardiologist. She was amazing. But when they first told me that I was like, this is a made up title for a specialty that doesn’t exist, but that’s wrong. Um, congenital heart defects are the most common defects in pregnancy. And my guess is because that’s one of the first organs to develop.

So there’s a lot of, you know, there’s a long time over which things can Develop in wacky ways. So I went to her and she gave me probably they have them now. So this was in 2001 So years ago  She gave me a home heart monitor, which looked like a toy you would buy somewhere. It was like plastic and You know, I would kid around with my husband saying like I had a better chance of picking up WKIP in Cincinnati than an actual heart rate because it just it was The heart rate in the lab was always 50, always solid 50, 50.

It would go to 49 and I would jump off the table. And the fetal cardiologist would say like, it’s okay, you know, whatever. But with the little toy heart monitor, it was always like 140 or 120, but she said, do it five times a day and make a log, log down all the rates. And it sort of felt like I recognized at the time, this feels like busy work, this feels like something to do since there’s nothing I can do, and I will do it anyway.

And I did it for the entire 12 weeks, five times a day at the exact same time. I was in graduate school at the time, so I had the flexibility. I would go lay on the futon and whip out the little toy and write down the fake number. Was it a fake number or was it a real number? I think it was a fake number.

I think it was, uh, maybe it was picking up, like, My heart rate and the baby’s and adding them together or something. I don’t know I never those heart rates looked normal and I never Every visit I went to for the next 12 weeks saw a heart rate like that with the actual machinery.  It’s so interesting, isn’t it?

So you waited for a while and then the doctors every time would say what? The fetal cardiologist was great with me and her job was in part to calm me because there wasn’t that much we could do. But the OBs, every time I went in there, they said, she’s not going to make it.  She’s going to die.

This heart rate is too low. Babies like this don’t make it. You know what? I think they were trying to manage my expectation. So, you know, now looking back on it, I don’t have a right answer for how that should be managed. I have total respect for what the doctors were trying to do. It is crushing to be told that over and over again.

And I was wondering, like, are they telling me because I’m not sobbing in the appointment so they think I don’t understand? I’m not sure,  but that is sort of how they managed it. And I would say one thing that that taught me that I brought into parenting that was really useful was to live one day at a time.

So it was too much to imagine out to 40 weeks. That seemed like years away. But every single day I could say, I just need to make it through today. And I feel like that is such a part of parenting. Parenting young kids because they’re writing on the wall and having a tantrum and throwing lunch on the floor and freaking out and  you know, when you’re new in this game, you may think like, well, this behavior leads straight to doing drugs in an alley.

So I’ve obviously raised, you know, a child who’s not going to make it, but it’s 1 day. This is where they are today. They’re probably tired. They’re overtired or hungry or whatever tomorrow will be different and the truth of the matter is tomorrow is different.  It is. Yeah, I can so relate to what you’re saying.

So what did you do next?  Well, so because we’re a rare case and they didn’t know what to do with me and my understanding from the many people I talked to at the time were like, was that doctors want to do something rather than nothing.  They put me on drugs that they didn’t say this at the time, but years later, when I looked at my medical file, it said experimental drugs and I am, I mean, they said, they suggested, like, we’re not sure we think this might help. 

There was a specialist in New York City. I put specialist in quotes just because no one had very much experience, but she had done the most research on this topic. And I called her and she was lovely. And she said, you know, it’s true. We don’t know whether this will help or this will hurt. But my doctors were panicked and at the time I thought, well they have much more experience with pregnancies that have cratered than I do.

So, I will go on the drugs. But I was really nervous about, you know, what am I doing to this child’s future? If the child has a future, I get that if she doesn’t survive, there is no future. But after five weeks, I took myself off the drugs.  Very much against their advice. But we’ve been doing all this screening and nothing had changed.

So their argument to me was that we’re stable, nothing has changed. And I thought, you don’t really know what you’re, you know, who am I to say no to advice from experts, but who am I to accept advice from experts who have told me they don’t know what they’re doing? It was really tricky, but that was a, a step.

This is another step into parenthood where, I’m sort of being forced to be a parent before I actually have a child.  But it was a useful experience of being someone else’s advocate. That is what you are doing, right? You are there to protect safety and security. And I was in this circumstance where no one really knew where those boundaries were.

And I thought I will feel responsible, whether that’s legitimate or not, at the end of the day, no matter what happens. And I will feel if she does survive and is born and has some catastrophic brain injury, I will feel like. I made the choice to do that.  The maternal fetal medicine doctors frequently asked for my advice.

Like, well, what do you want to do? And I thought like, why, why are you asking me? I haven’t cured a headache. How am I in charge of this? This is terrible, but I am sympathetic to them, right? They don’t want to be  perceived as pushing me into the wrong thing either. So it was very much a no man’s land, but that sense of advocacy sort of dawned on me in this period of like, Oh, this is what parenting is.

Let’s talk about that whole advocacy thing. I mean, so you advocated for your child by choosing to take yourself off the drug and knowing that the outcomes were totally unknown. Tell me what that was like. What does that feel like? It, it was really scary, but I, again, I caught, you know, I didn’t do this, like sit at breakfast over my cereal and think today I’m going to, you know, do something that’s totally reckless.

I did call the woman in New York. I called everyone I could find. I went to the medical library and did all this research to suggest that like, if this pregnancy is going to go down, it’s not because of my lack of effort.  So the conclusion that I came away from this, all this research was no one knows.

This is a total guess because we don’t know about many, to this day, we don’t know about how drugs interact with pregnancy.  That seems like a bigger risk to me because everything is the same. And the first day I stopped taking the drugs, I did sort of walk around on tiptoes, like how, what’s going to, is the shoe going to drop and then nothing happened.

Nothing changed. And actually now they don’t give women the drug that I got.  So I don’t know whether, I don’t know what that means necessarily. And for years, if my daughter, you know, sneezed three times, I would think to myself, it’s because of the drugs, right? That’s what that was. But that’s parenting is a giant responsibility.

Exactly. And you were given an extremely huge problem during that time when you’re already so vulnerable and wondering about every little thing. So what are some other lessons that you learned about your daughter and her strength? So one of the last and most profound things I learned was at the end of the pregnancy, we got to 37 weeks, which was longer than anyone thought we would get with a live fetus.

And the doctors decided to take her. So we schedule a C section. I showed up at the hospital, like it was a business meeting, which is to say, like, I didn’t have any contractions, I didn’t feel anything,  but we go through the C section procedure and I’m laying on the operating table and the surgeon is leaning over me.

My husband is sitting next to me and the surgeon says, like, I don’t think this one’s going to make it. Because birth is a huge challenge for a fetus. It has to go from the world of the womb to the actual world, and that requires all kinds of  changes in the body and a lot of pressure on the heart. But she survived that, which was a huge victory.

And then her heart rate continued to drop, which is not what we were hoping for. So she was rushed into open heart surgery the next day. And after the surgery, which the surgeon reported was successful, he said, whether she lives or dies is up to her now.  And that is just a profound thing to hear. I think.

A one day old child. Oh my God. It was so profound. But that is something I have taken with me into parenting, which is, this is her life. Yeah. I got all these lessons along the way of you don’t really have control. You think you have control. It’s impossible. I think for a pregnant woman, it’s happening inside you.

There couldn’t be anything more intimate. It’s impossible not to imagine that that is within your control, but it’s not right. Many of us who’ve experienced miscarriage know. Right, it’s not anything you did. You have no control. This process is on autopilot. And so that I have taken with me for her entire life for, for better and worse.

And it’s been a challenge to let go so completely, but, you know, even when she was little, even between, you know, zero and three, I would lay out a bunch of foods, she’d, you know, sort of pick dinner for herself, she had was dressing herself as soon as she could. I was completely fired. And, you know, sometimes that leads to ridiculous costumes.

And we just went with it because she, all the choices you’re making for your child, they will. Get the benefit if it’s a good choice, but they will also bear the cost. And I feel like they’re in a position to be able to say, you know, how much cost can I bear and what do I want to do? And what that looks like when they’re three is different than what that looks like at 13 and 20.

And, but it’s the same, right? It is their life. It’s a really important thing to grasp that. Yes. It’s almost this thing called mind mindedness, you know, that this child that’s been literally a part of your body is still a separate person who will,  they’re separate from you and learning how to navigate that as parent is it takes time and it takes a lot of.

Introspection and conversation and reflection and observation, all of those things that we learn from our Children and about ourselves throughout the process.  So, I’m curious about, um, what it was like throughout the pregnancy for you and your partner as far as just the conversations that you had. I mean, did y’all stay tracked together throughout these decisions and research and stuff?

I’m just curious about that. So that’s a good question, and I would say, we, this is going to sound insane, so I recognize that, but I sort of banned him from coming to any appointments with me, and my thinking at the time was, it’s so painful to have these doctors constantly telling us she’s going to die.

I need to be able to rely on somebody else who doesn’t have that perspective and has not gone through this exact experience. And I feel like  many people were optimistic with me in a way that I thought reflected an uneasiness with challenging feelings. So you know, friends who didn’t know the whole story or people at school would say, Oh, I’m sure it’ll work out.

And I get that they wanted to be optimistic and they, it’s too much to hold, right? It’s a stillbirth is a terribly frightening thing and sad,  but my husband, I thought, no matter what you say, you are in this with me and you will have to live with the consequence. So his optimism was the only one I could really  take in.

And I thought to protect that I need to build a fence around it and go by myself. So we. We did every day walk around and say, this is such a Gen X, uh, phrase, but felt very true in the moment. Like it is what it is. Yeah. There’s nothing we can do, but get to the next day and sort of, that’s what we’re going to do.

Yeah. And I would say my husband was very supportive in that he would literally be like, if I throw myself down the stairs, will you feel better? Cause I’ll, I’ll do that. Yeah. Should I play in traffic? Cause I’m happy to do that if you think that will help, you know, you are just waiting. Yeah. And it’s one of those things that strengthens your relationship in a way that nothing else could.

Absolutely. Y’all came away different people in a different relationship after that experience. Yep. You know, I have a course on pregnancy, it’s called birth school. And one of the modules is entitled important things to talk about before the baby comes. And Our conversation starters are really designed and built to get you talking about some things that you just don’t even know to talk about, you know?

Yeah. And you guys were thrust into this world of health  challenges in a, in a very, very early time, you know, like from day one. So tell us about her today. So she is a senior graduating from college. I think on her way to grad school to study physics, she’s doing fabulously. She did in the NICU after the surgery, everyone referred to her as the miracle baby  because she, because she did so well.

And she literally just broke through every, every limit that people thought would stop her.  So she’s great. I mean, she’s, she’s everything you would want in a daughter. She’s lovely. She’s funny. She’s smart. She has a lot of interests. We tried, she wasn’t allowed to do contact sports. So believe me when I tell you, we tried every sport that was not a contact sport,  including theater and singing and, you know, golf, tennis and track, everything.

We tried everything. She did take a lot of joy out of a lot of different things. Yeah. You know, I used to be an infant teacher and I had eight babies in my class and we had this one little kid, his name was Lane. And I don’t know, I think he came to us at around 12 months or so, but he had had open heart surgery from, I think in his first month of life.

He had a scar from his neck to his belly. Yep. That’s what she has done. That and that kid, he, I still think about him. I mean, he’s a grown up man now, but he would go out on the playground and he had to go to the ballpark all the time ’cause his big sister played softball. And he would get the, you know, the big plastic bat and he’d hit the wolfel ball and he’d run and run and run and run in circles and he’d slam on the ground and say.

Touchdown.  And this is a kid who had had open heart surgery, what, 15 months prior. And so it is amazing how resilient children are and how strong your daughter is. I’m so proud and happy for her that she conquered this thing in life. And I’m so Happy to hear your story. And I love that you are out there sharing it with the world and encouraging people.

Well, I have one more question for you. Do you have other children or was she your only child? I, so I had another child who ran into different medical issues as well, but also great, but you know, at some point. We ended up in the NICU again and the doctor said she will never walk or talk, but she has not stopped talking for one second her entire life.

Now she rows crew. So none of that came to pass. I mean, she’s, I assure you both walking and talking.  You guys must be doing some right at your house.  Yeah. Is something right or something terribly wrong? Yes. One or the other.  Well, as we bring this conversation to a close. Do you have a word of encouragement to share with those who might be getting ready to be pregnant or pregnant or a parent of a young child?

I would say this is one of the greatest jobs you will ever have, right? It’s challenging. It changes all the time. You are constantly learning new things. And in my experience, motherhood has been about this dance between control and letting go. Yeah. And many of us learn the lesson of letting go. I learned my lesson early and often right? It comes up again and again and again And just you know have trust that they will find this is how they learn so have trust that they will learn if you give them the space All right, but to people who are not yet pregnant, you know, I say good luck and it’s such an exciting journey And to people who are pregnant, I say again, congratulations, you’re in for a fabulous ride.

Thank you so much. I just love that. And I so appreciate you sharing your story with us with all of us.