Meredith, a mother in Ann Arbor, MI speaks with Dr. Fox about her pregnancy journey after being diagnosed with Gitelman syndrome, her child’s diagnosis of coarctation of the aorta, and more.
“Meredith’s Story: Gitelman Syndrome, Coarctation of the Aorta, and an Unexpected Turn”
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Dr. Fox: Welcome to today’s episode of “Healthful Woman,” a podcast designed to explore topics in women’s health at all stages of life. I’m your host, Dr. Nathan Fox, an OB-GYN and maternal-fetal medicine specialist practicing in New York City. At “Healthful Woman” I speak with leaders in the field to help you learn more about women’s health, pregnancy, and wellness.
All right, Meredith, thank you for volunteering to come on the podcast. How are you doing today?
Meredith: I’m doing well. I’m excited to be here.
Dr. Fox: Oh, that’s great. So, I’m curious, I ask a lot of my guests this. How did you find us, is question number one, and question number two, what compelled you to volunteer?
Meredith: Yeah, so I found “Healthful Woman” podcast, I think, just by searching the podcast app about a few months before I was trying to conceive, and I just wanted to learn more about, like, the process, and just hear people’s experiences. So, found the podcast, started listening, and loved it. Listened to it, you know, throughout my pregnancy. And I just found it to be a really helpful resource.
And once I, like, went through my own experience of pregnancy and birth, and telling people all the things I went through, I just knew it was like a really good story and figured it would be a good episode for the high-risk series [SP].
Dr. Fox: Well, we appreciate it, first of all, for listening, for finding us, listening, and then volunteering. Great. I’m glad we could sort of, you know, go along with you in your pregnancy. That’s why we’re here. That’s why we do what we do. So, awesome. And you are stationed in the great state of Michigan, yes?
Meredith: Yes, that’s correct. We live in Ann Arbor, Michigan.
Dr. Fox: Yeah, and we were talking earlier offline how prior to that, you were in the great city of Grand Rapids, Michigan, which is very important to this podcast because Emily and her whole team from DLM, who sort of oversees this project, and runs everything, they are hanging out in Grand Rapids, Michigan as we speak. That’s the home office of DLM.
Meredith: That’s awesome. Yeah, Grand Rapids is a great city. We loved living there and love the city. So, that’s great.
Dr. Fox: Yeah, no, it’s a good town I would say. I’ve been there several times, you know, because I grew up in the Midwest, and if I had to fly into that part of Michigan, that’s where we’d go. Gerald R. Ford International Airport in Grand Rapids, Michigan. There’s an international airport in Grand Rapids, Michigan. It’s a big, big, big town.
So, tell us, when did you have the baby, and so, we can sort of set up, when did the pregnancy start and go through there? So, give us a timeline of where we are.
Meredith: Sure. So, my son, Graham, was born June 3rd, 2022, so just a few months ago, and I found out I was pregnant. I vividly remember it was a Friday, October 1st of 2021.
Dr. Fox: Okay. So yeah, 2021. So we’re sort of in the middle of COVID, so to speak. And where are you in life at that time? Like, what are you doing? You know, who’s your family? What’s going on?
Meredith: Yeah, so I live at Ann Arbor with my husband, Jess, and I am an elementary school teacher. This was our first pregnancy, and we’ve been aunt and uncle to a few sweet kids from both my brother and sister, but this was our first endeavor into becoming parents, so we were really excited to get pregnant and felt, you know, very fortunate that we were able to conceive fairly quickly, and, you know, we just were really excited to start a family.
Dr. Fox: Now, we’re talking about the fall of 2021. What was it like at that time in the classroom with COVID? Was it a big thing still, or was it sort of in the past for you guys? Because I know it was different, like, all over the place in different states, different communities, different schools. What was it like for you guys?
Meredith: Yeah, in Ann Arbor, I’d say they definitely were more conservative with COVID policies than a lot of other places in Michigan. So, we still had a mask policy that everyone had to be masked 100% of the time during the school day, minus obviously eating or being outside. So, we definitely were wearing masks, but besides that, I’d say things were starting to feel a little bit more normal.
We weren’t allowed to have outside guests in the classroom, really, but for the most part, it felt much more normal than the year before.
Dr. Fox: And was there any anxiety about getting pregnant during this time because of COVID? You know, like, you know, a year prior during, you know, the heart of it, there was a lot of people who, you know, should I get pregnant? Should I not get pregnant? What’s gonna happen? Did you have that at all?
Meredith: No, not too bad. Honestly, I think I just was, you know, I didn’t wanna put my plans on hold because of it anymore, and I felt comfortable enough. You know, I was vaccinated, my husband was vaccinated, everyone was still wearing masks, and people I knew who did get it had really pretty mild cases, fortunately. And so, I felt comfortable enough, you know, wanting to conceive, and yeah, I just kind of figured like everything was gonna be okay.
Dr. Fox: Great. Now, did you have any concerns going into pregnancy?
Meredith: Not really. I think I was more concerned about possibly not being able to conceive quickly, or like as quickly as I would want to just because I had some friends who had struggled to get pregnant, and I had several friends who had multiple miscarriages. And so, I think I had that anxiety in the back of my head, but overall it was more like, okay, let me just get through the first trimester, and then I know like everything will be great.
Dr. Fox: Right. Now, you had told me earlier that you have an unusual condition that could have impacted your pregnancy. Tell our listeners about that.
Meredith: Yeah. So, in, I wanna say it was January, 2018, I was diagnosed with Gitelman syndrome, which is this rare kidney condition. So, I had gone to a new primary care physician, and as part of that initial visit, she had ordered just some labs and she, I remember saying, like, “Let’s just get a baseline for you.” So, I got the lab work done, and a few hours later, strangely enough, the doctor’s office called my husband, and I don’t know if they couldn’t get a hold of me, or if there was miscommunication there.
But I get this call from my husband saying, “Your potassium levels are really low, and the doctor’s all worried. Like, they’re asking if you’re having heart problems. Like, you need to get this medication.” So, eventually touched base with them, and they had me started on these potassium tablets and said, “You know, you need to get blood work done in another like two days. We need to make sure these levels are coming up. And if you start having, like, irregular heartbeats, like, go to the ER.” And so, I was like, “Okay, like, this is so weird.
I have no idea what they’re talking about. Like, I’m not having any symptoms. I feel totally fine.” So, this happens, you know, a few times where I take the pills, get blood work done, and my levels are still not where they should be. And so, the doctor eventually was like, “Yeah, we’re gonna refer you to a nephrologist.” So, I connected with the University of Michigan, Nephrology Department, and they ordered some more testing and basically said, “Yeah, you have this condition called Gitelman syndrome, where your body just does not hold onto potassium or magnesium.” And so, I had to take medication.
I take potassium tablets, as well as magnesium. And then prior to conceiving, I took a medication called Spironolactone, which is actually a blood pressure medication that has the side effect of, you know, causing your body to hold onto potassium. And so, before I wanted to conceive, the doctor had told me how, “You’re gonna have to wean off that medication because it’s not, you know, approved for pregnancy.” And so, I knew that that weaning process, and like potentially my levels might get messed up before conceiving, but I had been a part of a Facebook group with people who have that condition for a few years.
And so, I’d asked and read a lot about people going through pregnancy with the condition, and most people said, you know, it was manageable. They might have to get, you know, IV supplementation sometimes, but for the most part people had like pretty complication-free pregnancies, so I felt pretty confident that that would be fine, just knowing that it might be a little tricky getting my medication figured out, and I might have some more symptoms than I did pre-pregnancy.
Dr. Fox: Prior to pregnancy, did you have any consultations with either an OB or a maternal-fetal medicine doctor to sort of plan for that, or did you just sort of like know based on speaking to others that, you know, “When I get pregnant it’ll be fine,” and you’ll sort it out then?
Meredith: Yeah, I did, actually. My nephrologist referred me to an MFM doctor at U of M, and so, I did have like a consult with her a few months before I started trying, and she kinda walked me through what I could probably expect based on what she knew of the condition. And they just told me, you know, “Just plan to give us a call when you get a positive test and we’ll like get you set up.” So, that’s basically what it was. It was just like, “Go try to have a baby, and just give us a call when you need us.”
Dr. Fox: I’m a big fan of those consultations, I do them a lot and, you know, sometimes you meet people say, you know, “You’re all good, no changes, you’re ready to roll.” But sometimes, for example, maybe you wouldn’t have known that this Spironolactone is something you gotta come off of. I mean, obviously, the nephrologist should tell you that as well but, you know, sometimes people are on things for a very long time, and they don’t even think to touch base with their nephrologist or whatever and, you know, things like that, or also maybe, you know, other things, being able to check for pregnancies.
So, I think it’s great that you did it, and I think it’s great that they, you know, tried to keep it calm and reassuring because that’s appropriate, obviously. And then, when you did get pregnant, how did that go? How was the pregnancy in the beginning?
Meredith: Pregnancy, in the beginning, was good. You know, it was normal, and I forgot to mention, like, I think it was like a month or so before I started trying that they had me get off the Spironolactone. So, I think that month was…I was getting blood work done, and I was able to take a different medication, Amiloride, instead of Spironolactone. So, once I had that situated [SP], we started trying, got pregnant quickly, which was wonderful.
I just remember the first trimester, like, I had the typical symptoms of being nauseous. I was pretty tired but, you know, I never like threw up, which I saw as like a point of pride. Like, okay. Like, I was nauseous, but I never, like, pulled the trigger or something. But, yeah, for the most part, the first trimester was good. I just remember every week being like, “Just get me to the next week. Like, I just wanna get to my second trimester and feel better.”
Dr. Fox: Right, right. Plus if you threw up, all the third graders would be like, “Why is Ms. Harrison throwing up on the floor?”
Meredith: Totally. Oh my gosh, yeah. That would’ve been traumatic for them.
Dr. Fox: Nothing better than being pregnant and running after a bunch of third graders.
Dr. Fox: All right. And then, how did it go along in the second trimester?
Meredith: Pretty uneventful. I remember it took a few weeks to kind of get my meds situated [SP]. Like, there was maybe a month and a half of where I was getting my blood work done like every week of them just trying to get my potassium level stabilized. And so, I ended up, I think, through, I don’t know when it was, maybe around Christmas, they finally like got my dosing correct. And so, it was, I wanna say 15 potassium pills a day.
Dr. Fox: Oh, God.
Meredith: Yeah, so it would be like five. I just split ’em up like five each meal, and then maybe…I can’t quite remember exactly how many magnesium, but like, easily 10. So, it was a lot.
Dr. Fox: Yeah, it’s a lot of bananas.
Meredith: Yes, it was a lot. So, you know, once I got that situated though, I felt better about everything, and I had my anatomy ultrasound at 20 weeks. We were super excited. We hadn’t found out the gender to this point, and so, we went into that appointment feeling really excited for what was to come, and everything seemed to be fine. The tech left and said, you know, “I’m just gonna go show these to the doctor. You know, I’ll be right back.” And I’d had multiple ultrasounds and scans.
Just being with the high-risk clinic, I had quite a few before this, but I remember the doctor came in and I was like, “Okay, that’s a little weird.” Like, usually the tech just comes back and is like, “You’re good.”
Dr. Fox: They see one of us, that’s not good. It’s interesting. In our unit, I come in…My partners, we come in and speak to everybody. So, there are people who are like, “Why are you coming in?” We’re like, “No, no, we always come in.” But if you’re not used to it, then yeah, it’s the grim reaper showing up, you know.
Meredith: Yeah, yeah. And so, funny enough, is the doctor saw, like, I had a shirt on with the name of my school, and she’s like, “Oh, my child goes there.” So, kinda like broke the ice. But, you know, she’s doing the scan, she’s like going back over everything, and I can tell based on, like, what the tech had pointed out before she left, that she’s looking at the heart, and she’s kinda looking at it over and over again and, you know, she’s not really saying anything.
And so, you know, I’m just sitting there mentally trying not to freak out but, you know, just wanting to know what’s going on.
Dr. Fox: That’s a tough spot to be in, for everybody, because…for you it’s obviously very tough because you don’t know if everything’s okay, right? We’re talking about your baby here, and for us, sometimes we’re not sure, and you don’t wanna scare someone unnecessarily, but you also don’t wanna come and reassure someone, and then tell them there’s a problem. And it’s a real…it’s somewhere between a challenge and an art exactly how to do that, and it’s different for every person based on sort of, you have to, like, read the room, what’s going on.
I usually say, you know, like, “Everything looks good. I just need to look at the heart, you know, to make sure he’s fine and check anything, like…” Again, it also depends how confident I am it’s gonna be okay, versus not okay, sort of what the tender is. It’s tough. It’s not easy to get that right because it’s a very anxiety-provoking situation, like, legitimately. I mean, obviously, it’s hard to make, you know, that without any anxiety.
Meredith: Right. No, totally, that makes a lot of sense. And so, she eventually stopped and kind of just explained, like, “This is what I’m looking at,” and based on her best, you know, judgment of what she saw, she said, “It looks like he has this narrowing in his aorta called a coarctation.” And basically just said, you know, “You’re gonna wanna follow up with pediatric cardiology.” So, we did. I think it was like two weeks later we went, and had an echo with them and [crosstalk 00:13:31].
Dr. Fox: Wait. I wanna ask you about those two weeks first. So…
Meredith: Oh, yeah, sure.
Dr. Fox: …between hearing that, and meeting with the pediatric cardiologist, so you’re saying two weeks. So, what percentage of your time is spent Googling during those two weeks?
Meredith: Oh, gosh.
Dr. Fox: 100, 98?
Meredith: Maybe like 60. Like, initially, like, I felt like, you know, you hear that, and we like right away were like, “Okay, like, we need to, like, find out what this is.” But then, you know, you start to think, like, “Okay, well, we don’t know for sure. Like, I don’t wanna go down this road.” Because she had said, you know, like, “This is what it looks like, but like, you really need to talk to the experts.” And so, I was trying to be, like, “I’m not gonna go there until they tell me, like, I need to go there.”
And so, yeah, it was definitely stressful, but my husband and I are just like very positive people in general, I feel. And so, between the two of us, I think we were both kind of trying to, like, keep the hope alive, like, for each other. Like, we don’t know anything for sure. And so, those two weeks were tough, but not agonizing, I guess, I should say, because I just was thinking, like, “We need to hear from the experts before we go nuts here.”
Dr. Fox: That’s fair. Ladies and gentlemen, this is why the Midwest is awesome. Just for the record, this is the Midwest in a nutshell. “It’s all good. It’s all good, don’t worry. We’ll see. We’ll be fine.” You know, it is interesting though because that specific condition, coarctation of the aorta, is very difficult to diagnose in utero, in a fetus. It’s hard to get it right. It’s something that you could miss, meaning the baby could have it and you not see it for a lot of reasons.
Sometimes because the findings are very subtle, and also because it’s something that can change over the course of pregnancy. And so, earlier in a pregnancy, it might look, you know, totally normal or almost totally normal, and it’s only sort of evident as time goes on. So, it’s frequently one of these diagnoses that we say possible or suspecting, or potential where we tell people, you know, “We’re not 100%.” It’s one of these things where we need more time to let it evolve.
It’s also something that a lot of people don’t pick up at 20 weeks for that reason. So, it’s impressive that they got it, that the tech got it, then the doctor got it at 20 weeks.
Meredith: Yeah, I know. I remember asking, I think it was at our echo, and said, you know, like, “How small is his heart right now that you’re looking at?” And I wanna say they said, “Oh, it’s like a wild blueberry.” I was just like blown away that, like, “How can you see something so small in something so small?”
Dr. Fox: Yeah, it’s a small structure. So, what did the pediatric cardiologist tell you when they saw it, and did the other scan?
Meredith: So, the doctor confirmed that, yes, there was this narrowing there and sort of tried to lay out, you know, “If it continues the way it is, like, we suspect that he’s gonna need surgery after being born.” And likely, it would be a few days after birth, and kind of walked through what would happen after he was born. And so, they had said, you know, “Once he’s born, we can maybe give you like an hour with him.” And I remember just, like, hearing that just, like, gutted me, just thinking about them like taking my baby from me, and not having this time with him.
And he kinda walked through that. “Based on the narrowing of how his heart is functioning, he might need this.” I don’t remember the name of the medication, but to keep the PDA open. Do you know what I’m talking about?
Dr. Fox: Yeah, prostaglandin.
Meredith: Yes. He was saying that, you know, he might need that right away, and so, he’d have to be in the…I don’t remember the acronym for it, but it’s the ICU for heart patients, for pediatric heart patients at U of M. PTCU maybe.
Dr. Fox: There’s a lot of acronyms. There’s PICUs, NICUs, CCICUs, but maybe…yeah, I don’t know what they have, what their acronym is there. I’m sure it’s something with pediatric and cardiologist. There’s a P and a C in there somewhere, I’m sure.
Meredith: Yeah. And so, they had said, you know, we may have to go there right away, and stay there to get this medication. He said, you know, “He could be…some babies respond, and they’re very, like, drowsy because of the medication, so he may need assistance breathing, may need assistance eating.” And so, you know, your brain just starts like going crazy, and you’re just imagining your little baby hooked up to all these tubes and things, and you’re just, like, “I can’t process this.” And so, that was really hard to hear.
Like, very emotional for both my husband and I just thinking, like…you know, I just wasn’t thinking that he was gonna need all this. And so, even going into that appointment, thinking like he had some narrowing of his heart, I was thinking, “Oh, maybe they’ll like go through his leg or something.” But to hear, you know, “Oh, it’s likely be open heart surgery,” on a newborn is really scary.
Dr. Fox: Did they give you any sense at the time, sort of in generalities, because obviously, it’s hard to know specifically, what the prognosis is for a baby who’s born with this, right? Because they’re telling you, you know, “He’s gonna go in the ICU. He’s gonna need this medication, he’s gonna need surgery,” and which is, you know, “Oh, my God.” But then they say, “But, you know, this is what we expect afterwards. Outcomes will be great, outcomes will be, you know, very…not so great.” I mean, let me just say, what did they tell you at the time?
Meredith: Yeah. They were very positive, which I appreciated in explaining that, you know, “In the world of heart defects, like, this is a mild or very treatable one.” And so, they assured us, you know, “He will likely go on to live like a totally normal life. It’s just this initial part that he may need the surgery for.” And they had said, you know, with coarc, like, you had said, it’s kind of like you don’t know how it’s gonna checkout [SP] when they’re born, and so, they also had said it may be like a watch, and see.
Like, “We can’t tell you for sure, like, on day four he’s gonna need surgery or whatever.” It’s gonna be, he’s born, need to evaluate, and kind of see how he does to determine what our course of action is gonna be. But overall, they were very positive about what his life would look like long-term, and so, that really gave us a lot of peace, which was helpful.
Dr. Fox: Did you, or did they at any time have any concerns that maybe this was related to the Gitelman syndrome, or to any of the medications you took? I would suspect the answer’s no, but I’m just…is that something that came up that you said, “Is this because of that?” Because it’s sort of…it’s like two unusual things, so to speak, in this person.
Meredith: Right. I did ask that, and they said no. They didn’t suspect that it would be related at all, but yes, I definitely thought about that, and you start thinking about everything, you know, that you’ve ever done. Like, “Oh, my gosh, is it because I had coffee that like something developed weird and…” You know, your brain just goes there. But yes, they definitely assured me that they didn’t suspect the two were related.
Dr. Fox: Right. Okay, so after they made the diagnosis, did it change your, like, prenatal care in any way in terms of like frequency of visits or anything…any other specialists you had to see, or was it just sort of moving on and seeing them periodically?
Meredith: It did change my care a little bit. We started seeing cardiology. I think we saw them two more times after, and we met with a surgeon, which was really nice to be able to talk to them about what surgery would look like if they decided that’s what he needed. My care for the most part with my OB was normal, typically, I would think. They did talk about inducing me, so they could try to coordinate with cardiology if he was gonna need surgery or, you know, need intervention that the team would be ready and available.
So, that was discussed, but besides that, I wanna say my appointments were pretty typical.
Dr. Fox: Okay. What were you doing to prepare for birth? Sort of, you know, you have all the standard new parent type of questions and, what do we do, and how do we do it? And then on top of that, this baby may end up in the NICU and getting surgery right after birth. How did it sort of change your preparations for that day?
Meredith: Yeah. I think the hardest part was just mentally, like, we didn’t know when he was gonna go home. And so, that was the hard part, was thinking like, “Okay, is he gonna come home in a few weeks? Is he gonna come home in a month?” And so, just like silly things that I think now is kind of silly, but like, “Do I buy newborn diapers? Like, is he gonna grow out by the time he comes home? Are friends and family gonna be able to come see us? Should they wait to buy plane tickets because we don’t know what’s gonna happen with him?”
So, that part was the hardest part for me. It was imagining, like, the first month or two of his life. I’ve had friends and family who’ve had babies, and those first few weeks are so sweet at home with your little family. And that was hard to think we might be going back and forth to a hospital in those weeks.
Dr. Fox: Yeah. How open were you about this with your friends, also, you know, family, friends, public, and sort of that in that order?
Meredith: Yeah. Friends and family, we were very open, I would say. Like, we knew we were gonna need support, and just to be able to talk to people about this. And so, we shared with, you know, all of our close friends and family pretty much right after we found out about it and it was confirmed. And then, you know, publicly, social media, other external circles, I kind of knew like I wanted to say something because it was, like, I didn’t wanna have to say something after the fact, after he was born, had surgery.
So, I decided just to share on my social media when I felt comfortable that, you know, we’re really excited, we’re gonna be having this baby, but we also, you know…I’ll miss out, that he might need surgery. And, you know, I wanted to share with as many people as possible because I thought the more people praying and thinking of us, like, the better. So, I was very open, and I’m very open about everything.
Dr. Fox: Right, and it also sort of changes the context of all the questions and texts and emails and whatever you’re gonna get after birth that, you know, people they’re unsuspecting. How would they know? Just so that they know that there’s a little bit more going on, and you may not be as responsive, or you may not be as, you know, peppy positive because you’re really worried, and it just sort of gives everyone an opportunity to sort of know where you are, so they can, you know, tailor their congratulations and responses and sort of, you know, how much they’re bugging you after you deliver to the situation.
Which I think is great. Not everyone’s sort of able to do that, to share in that. Do you regret it all, or do you think it was a good decision?
Meredith: To share?
Dr. Fox: Yeah.
Meredith: I think it was a good decision because, like, I wanted people to know and be able to like listen to me and support me. And so, yeah, I’m glad that we shared and were very open about everything.
Dr. Fox: Okay. How’d the birth go?
Meredith: Yeah. So, I wanna say around 32 weeks, they were doing ultrasound and we’re like, “He’s breech.” And so, they started kind of preparing me that, you know, “If he doesn’t turn on his own, then you’re gonna be looking at a C-section.” And so, I wanna say at 36 weeks, they checked again, still breech, and they offered me an ECV. Right away I was just like, “I don’t know if I wanna go through with that.” Like, I have never been someone who…you know, I have to have a vaginal birth. Like, I’d love to, but I wasn’t, like, “Is this a must for me?”
And I just remember talking to, like, my mom and just saying, you know, “After everything, like, we’re going through, I just dunno if I wanna put myself through that or maybe not to work.” And in a way, it’s like, to have a little bit of control and know like, “Okay, I’m gonna go in, have him, and he’s gonna have this calm entry to the world,” sounds kind of nice, and soft.
Dr. Fox: Yeah. For our listeners, ECV is external cephalic version. That’s to turn the baby. We did a podcast on it, you can look it up. All right, good.
Meredith: Yes, and I listened to that.
Dr. Fox: Hey.
Meredith: I did, yeah.
Dr. Fox: Oh, okay. And was it helpful?
Meredith: Yeah, it was, you know, it’s just knowing what’s gonna happen. I’m very much a person who’s like, “I wanna know what I’m walking into.” And so, I wanted to understand the logistics of it, and I think it helped me make a more informed choice that it just wasn’t something I wanted to do. But yeah, you know, I talked to friends and family, and there was several people who said, “Oh, yeah, I know a girlfriend who had it and it worked,” or, “So, I had this person who tried it and it didn’t.”
So, you know, I knew what I was saying yes or no to, which was helpful for me to be informed. But yeah, I just decided it wasn’t for me. And so, we scheduled a cesarean, and we went in, and it was a beautiful day, and we got there, I wanna say around 10:30. And, you know, I’d done all the things, like fasting, not drinking any fluids, and they’re like, “Great news, like, such a beautiful day. We’re so glad you’re here, but we’re full, and we can’t take you yet.” And so, they said, “Can you come back in 90 minutes?” And I was like, “Okay.”
And they said, “But we can give you juice,” and I was, like, so happy to have some fluids. So, we walked around the hospital. Fortunately, there’s a nice courtyard and sat outside, and it’s funny like we have pictures from that, and it’s just very surreal to look back on that. Like, yeah, we were just waiting for our baby to be born. And so, got admitted, and they took some lab work for me that morning. I hadn’t taken my potassium pills because I hadn’t eaten anything and I was like, “Oh, it’s gonna make me sick.”
And so, they did blood work, and they decided to give me some pills before I went in, and obviously, let me drink some more fluids to take them, thankfully, and decided I was gonna get a potassium IV during the procedure. And so, it’s kind of cool. I had a full circle moment that one of the doctors that came in and talked to me was like, “I dunno if you remember me, but I was at your initial appointment,” and I was like, “Oh, my gosh, yes. Full circle.” So, that was really sweet…
Dr. Fox: Cool.
Meredith: …to see someone at the beginning and at the end, which was really cool. The experience of the day was really great. Like, I had a very positive C-section experience and definitely would share that with anyone who was wondering. Like, a planned C-section was very calm, and just really nice. The anesthesiologist came in, explained everything to me and I asked him, you know, “Okay, how do you ensure that I’m numb before you guys start doing anything? It’s like, that’s what I need to know, is you’re gonna like triple check.”
Dr. Fox: He’s like, “Man, that is my only job,” at least at the beginning.
Meredith: Yeah. He’s like, “Well, we have this very high-tech device called a toothpick that we will poke you with,” and that’s exactly what they did. I went back, you know, got all situated, and they did that. You know, they’re like, “Okay,” [inaudible 00:27:10] up by my shoulder. They’re like, “This is sharp and pokey. Like, you tell us when you feel that and when you don’t.” So, they assured me everything was good. I felt really comfortable.
My husband came back and, you know, 10, 15 minutes later, Graham was born, which was surreal. I just remember them saying, you know, “Oh, we see a butt.” And she was like, “Okay, so I guess he really is brave.” And one of the doctors was like, “Oh, he’s really cute, and we don’t always say that. Like, he is really cute.” So, I was like, “Well, thank you.” So yeah, he was born, and my husband went with him. So, we got to hold him for maybe, you know, 15, 20, 30 minutes.
You lose track of time in that moment, you know, what is going on, and you’re like having an out-of-body experience that you just had a baby. But they took me to recovery, and Graham went to what they call the nest with Jeff and they started doing, you know, initial testing, and they did an echo while I was in recovery. And that first night, the cardiologist had said, you know, “Yep, we see the narrowing, but we’re just gonna keep an eye on it right now.
Like, his heart is functioning normally. We don’t think he needs the medication or any intervention from us right now, so he can go to your room.” And I just remember being like so happy that he was gonna come up and be able to stay with us overnight. And so, we went to the recovery, and everything seemed to be going well. He was having low blood sugar that they noticed, and so, they did like the gel, and he wasn’t eating a ton. Like, he was pretty jaundiced and just, like, lethargic overall.
And so, he did end up having to go back to the nest and eventually the NICU for an IV for blood sugar. But, you know, I was doing pretty well in recovery. Like, I definitely was very sore. Like, I remember preparing myself for that mentally just based on everything I’ve heard of C-sections, you know, that it is pretty painful when you’re coming out of recovery. And so, I was experiencing that, but it definitely was manageable, and I just was so relieved that, like, he was able to be with us for the most part.
Dr. Fox: Yeah, that’s great. And how long were you in the hospital, and how long was he in the hospital?
Meredith: I was there for, I wanna say two nights I stayed, and then Graham actually had to stay for…he had to stay a little bit longer than we thought. He was there for like nine days for his blood sugar. It just would not stay up, and they wanted to rule out anything going on. So, they had some endocrinology with consulting and everything, and by the end of that time, his blood sugar was getting better, and they sent us home with like a glucometer to just monitor it, so.
Dr. Fox: But his heart was doing okay during that time?
Meredith: Yes, yes.
Dr. Fox: And they did not suspect he would need surgery in the near future, like in that time?
Meredith: Right. Right. Yeah, so he had, I wanna say another echo on…he was born on a Friday, I think on Sunday he had another echo, and they were like…I just remember our doctor, like, looking at us and being like, “This is best case scenario. He is doing really well. Like, yes, the narrowing is there, but his heart is functioning so well.” And so, that was just, you know, such a relief to hear. And the doctor even like put his hand on my shoulder, and he’s calling me mom, and I just was so endeared to him, like, “Oh, my gosh, like, this is just wonderful to hear this as a parent.”
Dr. Fox: Wow.
Meredith: And so, yeah, they told us, you know, “We’ll follow up in a month and make sure that everything is still looking good, but he doesn’t need to stay here for this, and we don’t anticipate he’s gonna need surgery right now.”
Dr. Fox: Wow. And so, this is now, we’re talking he’s, I guess, five months give or take?
Dr. Fox: How’s he doing five months old?
Meredith: He’s doing great. We had an appointment, actually, last month, and they just followed up and looked at everything, and the narrowing is still there, but it’s not affecting the functioning of his heart. He does have…I don’t remember the name of the valve but, like, it’s supposed to be tricuspid and his is a bicuspid.
Dr. Fox: The aortic valve, bicuspid?
Meredith: Yes. So, he has that, which I guess the coarctation and this bicuspid valve go together frequently.
Dr. Fox: Yeah, they’re right near each other, so it’s the same sort of origin.
Meredith: Right. Okay, that makes sense. And so, they said, you know, “We’re gonna need to monitor this, probably annually, but as of right now, like there’s no limitations on him as far as like…” you know, that’s one of your questions, like, can he play sports? Can he like run around? Is his heart gonna be okay? And they said, “Yes.” And the other reassuring thing that helped with us like leaving the hospital and just like caring for him day-to-day is that our doctor assured us like it would be a slow degradation.
Like, he would be, like, sleepy, he might turn blue around his mouth, like, he wouldn’t be eating as well. And so, that gave me comfort that, like, I wasn’t gonna turn around and something suddenly would happen to him.
Dr. Fox: Right. No, that makes a lot of sense. If it got worse, how it would play out, so you’re not worried it’s gonna be sudden? Did they have a sense of the likelihood of him needing surgery ever at this point?
Meredith: Yeah, I don’t…they haven’t been able to like give a prediction, but they have said that if he were to need something, likely, that it would be a much more mild procedure where they could like go in through his leg and use like a balloon. And so, potentially, down the road he might need that, but they’ve also said like, “That could be like decades from now.” So, basically, it’s just kind of watch-and-see right now.
Dr. Fox: Wow, that’s awesome. What a great outcome. And then you had another sort of unusual wrinkle to your story?
Meredith: Yes. Yeah, so while we were still in the hospital, I’d been discharged at this point while Graham was still getting some help for his blood sugar. I was at home and a message popped up through my health app. I use, like, the portal. And I get this message, and it’s from a doctor that I don’t recognize the name, but just had said, you know, “I’m an OB with UOM [SP]. The pathologist who looked at your placenta wants you to go get this test done and it’s an HCG test.” And so, right away I’m like, “Okay, that feels weird, like abnormal.”
And so, I messaged my friend who’s a nurse, and she’s had three kids of her own. And I said, you know, “Is this normal?” And she said, you know, “No, like, that’s not typical.” And so, she said, you know, “Why don’t you…” and she actually works for University of Michigan too, so she just was a great resource for me. But she had said, “Why don’t you message back and, you know, just ask if they can give you any more information?” So, I did that, you know, and asked, like, if there was an abnormality that they found, but said I would go get this blood work done.
So, we were at the hospital, you know, during the days with him, so that was no problem. Went over to the lab, got the blood work done, and a few hours later, we were just hanging out in Graham’s room and I remember my mom and my sister were like 10 minutes away from coming to meet Graham for the first time, and this like test result populates in my app. And I open it up, and it’s the pathology report for my placenta. And of course, like, 99% of it I don’t understand what it’s saying, but I’m just kind of skimming it quickly, and I see the word carcinoma.
Dr. Fox: Wait, it popped up before anyone told you?
Dr. Fox: Oh, dear. I think that’s not supposed to happen.
Meredith: Yeah. There is a warning in the app that will say, like, you know, “Sensitive information could be in this message, so it’s almost like proceed at your own risk.”
Dr. Fox: Yeah. Who’s not gonna open it then, right?
Meredith: I know. Right. Like, I cannot. And so, I’m reading it and I see [crosstalk 00:34:25].
Dr. Fox: Whatever you do, don’t open this result. Yeah.
Meredith: A hundred percent. Like, I feel like there has to be a better way. But anyway, so I see that, and I, you know, I don’t know a lot but I know that that’s a cancer word. And so, I start freaking out and, you know, my husband’s trying to like keep me cool. But we message, or we talked to our nurse who was working with Graham and, you know, said, you know, “This just happened. Like, is there any way you can like help us get in contact with this doctor?”
So, she paged him, and I sent out a message and said, you know, “I’m in the hospital. Like, my son’s in the NICU. Is there any way someone can come talk to me, or someone can call me?” So, my mom and my sister get there, I’m like at the verge of tears. Like, this thing came in my app, you know, trying to explain everything that’s going on. This is supposed to be this, like, happy moment of them meeting Graham.
And the doctor comes, and we talked to him, and he basically says, you know, like, “I’m really sorry to tell you this, but they found this cancerous tumor in your placenta, and it’s called a choriocarcinoma.” And he’s like, “Honestly, it’s really rare, and I don’t know much about it to really like tell you much right now.” But he’s like, “I’m gonna put in a referral for you with the cancer department.”
Dr. Fox: Wow. That must have been a great evening.
Meredith: Yeah. Honestly, it was…
Dr. Fox: No, it is super rare. I’m not saying the doctor did anything wrong. I mean, this is not something you see typically. Like, we know that these exist, and we know about them, and they’re on our board exams, but this is not something that comes up day-to-day, week-to-week, or even year-to-year. They’re pretty rare. They’re pretty rare. And obviously, yours was found incidentally. It wasn’t like there was a problem that ultimately got diagnosed as a choriocarcinoma.
It was just they happened…you know, they sent the placenta to the pathologist and they found it, meaning, had they just thrown the placenta out, you would never know.
Meredith: Right, and that was one of my questions was, is it typical that, like, placentas get sent to pathology?
Dr. Fox: Different places do it differently. I don’t know if anyone does it routinely like an…Or it’s just because it’d be a big burden on the pathology department to try to read all those placentas and also cost. So, I suspect it’s not for everyone. My guess for you, my guess is probably because of either the Gitelman syndrome, and they wanted to double-check, or maybe because, you know, the baby had the heart defect, and maybe they’re just looking if there’s any correlation.
Usually, if there’s like conditions, you know, hypertension, diabetes, we tend to send the placenta. People argue about the value of it. Some people think it’s very valuable, some people think it’s not so valuable at all. But every now and again, you find things in there that are completely unexpected, and then…but it’s real. I mean, obviously, I assume that they’re following you closely in your hCGs and, you know, to see what’s going on. Is that going okay?
Meredith: Yes. So, right after…shortly after they got me connected with the oncology department, and some initial testing was ordered, so I did, like, a pelvic ultrasound, I did a chest x-ray, and then I did a CTE, and everything came back clear. There was no signs of tumors that had spread, which was great, and I started getting hCG testing, I think weekly at first, and my levels were going…
Dr. Fox: Until it reach zero, yeah.
Meredith: Yes, and my levels were going down, as expected, which was great.
Dr. Fox: Right. And then probably every month for like six months to a year or something like that. Yeah.
Meredith: Right. Right, right. And I was able to actually meet with the pathologist who found it, and that was really helpful just to hear. I mean, placentas are amazing. Like, I just didn’t really understand what it was, or like how it formed, and I’m sure a lot of people don’t, until that call, like, for explaining, like, “Oh, you and the baby are building it together, and because of where it was located on, you know, X side, we think it was from Graham,” because it’s the side that was facing him, I think is what she had said.
You know, and so, it’s like these abnormal cells that just formed. And I asked her, you know, “I know there’s no way of knowing this for sure, but just like based on the size, if you had to, like, make a guess of how long that had been there?” And she said, you know, “It was only about a centimeter, I wanna say.” She thought that maybe, like, the last six to seven weeks of my pregnancy.
Dr. Fox: Yeah, that is a pretty small one. Sometimes when there’s bigger ones, sometimes it can cause problems during pregnancy, like high fluid, or your blood pressure or something. But, you know, if it’s small, it’s sort of incidental. Yeah, I’m sure for her it was like really cool to explain it to you. This is like, you know, one of the cool parts of their day, to see something unusual. You know, not great to tell someone that they had a cancer placenta, but it’s just rare. And so, it’s odd to say that it’s fascinating, but it is.
Meredith: Right. Yeah, she had said she’d only seen one other one in her career and it was, I think another hospital had sent it to her for, you know, her opinion and she said it had overtaken like a third placenta, so.
Dr. Fox: But you’re doing okay with that. No issues other than being scared to death?
Meredith: Right. Yeah, no issues. I just always said, like, “This has been like the best week of my life, and also the worst week of my life to hear this news while, like, having a baby.” But yes, I’ve just had blood testing, like, once a month for my hCG levels, and those have stayed low. So, in January, as long as everything, you know, stays as it should, I’ll be like, in the clear, which is great.
Dr. Fox: Yeah. Wow. Looking back now, so you know it’s, I don’t know, a year and change since before you got pregnant. How are you a different person from this whole experience?
Meredith: Yeah. Well, I think going through everything we went through has definitely bonded me more to my husband. Just, like, especially when Graham was in the NICU, and we had just heard this news of like this cancer that they found, he was strong for me when I could not be, and he was just so reassuring to me that, like, “Everything’s gonna be okay, we’re gonna get through this.” And so, just my relationships with Jeff and my family and friends have been strengthened so much because I just relied on them when I was tired and felt like I couldn’t keep going.
Like, their encouragement really just lifted me up, and so, that was huge. And I think it puts everything into perspective as well. Being in the NICU is like a very hopeful place, but also very sad, like, seeing these families who’ve been here for weeks and weeks, and these babies who are so sick, it just makes you so grateful for having a healthy baby, for having a relatively healthy pregnancy and recognizing that, like, the little problems that we have day-to-day are nothing in the scheme of things.
And it just makes you so grateful for everything that you have. And so, I’d say it’s made me have a lot of perspective about what’s important in life, and just to let the little things go because it’s just not worth, you know, agonizing over.
Dr. Fox: Amazing. Meredith, thank you so much for volunteering to come on the podcast, and telling your story. It’s awesome. I’m glad you’re well. I’m glad Graham is doing well. It’s great. And obviously, there’s a lot going on, and it could have gone in, you know, 1,000 different directions, but I’m really happy where you guys are now. And again, thank you so much for sharing. I’m sure our listeners really got a lot out of your story and appreciate it.
Meredith: You’re welcome. Thank you so much for having me.
Dr. Fox: Thank you for listening to the “Healthful Woman” podcast. To learn more about our podcast, please visit our website at www.healthfulwoman.com. That’s H-E-A-L-T-H-F-U-L-W-O-M-A-N.com. If you have any questions about this podcast or any other topic you would like us to address, please feel free to email us at email@example.com. Have a great day.
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