“Lauren’s Story, Part 1: Twin to Twin Transfusion Syndrome, TTTS – with Lauren Burstein

Automated Voice: 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.

Dr. Fox: All right, Lauren, welcome to the podcast. This has been a long time coming.

Lauren: It has. Thank you so much. I’m so happy to be here. We’re very grateful to be here, actually.

Dr. Fox: Oh, well, that’s wonderful. We’re coming up. I guess, by the time this is dropped, we’re going to be coming up almost on a year, the birth of your twins.

Lauren: Yes. Yes.

Dr. Fox: They’re what? Like nine months now?

Lauren: They’re eight months now.

Dr. Fox: Eight months now. Oh, yeah, that’s right. I should have been able to do the math. Nine minus one equals eight. Okay, you know, whatever. I don’t do math anymore. That’s amazing. And how are they doing?

Lauren: Thankfully, they’re doing so well. I just dropped them off at daycare, actually. And…

Dr. Fox: So, you’re doing well also?

Lauren: Doing well. Back at work. And, I mean, they’re just amazing. They’re hitting their milestones. They’re so happy. They’re just the sweetest boys you can imagine. It’s a pleasure.

Dr. Fox: Yeah. So, we’re going to talk about that pregnancy because it was, for lack of a better term, a wild ride. And, you know, thank God everyone knows now that they’re well, and everything is okay, so the story is going to end well. But it was pretty exciting, for lack of a better term. And, yeah, I mean, listen, it’s a great story, and I think everyone’s going to appreciate hearing it from you. But before we start, tell us who is Lauren Burstein? Who are you? What’s your story? Where do you live? What do you do? And just so everyone gets a sense of, you know, who our speaker is today.

Lauren: Sure. So, I live in Teaneck. I’m married. I now have three children. And I’m an English teacher. I work at a Jewish high school, locally. And I am — Yeah, that’s pretty much who I am.

Dr. Fox: And coming into this pregnancy, we’re going to talk about, you already had your older daughter, Liana. And when was she born?

Lauren: So, she was born in May of 2022. So, they’re pretty close in age. They’re only 19 months apart.

Dr. Fox: Wow. So, three kids. Yeah, that’s okay.

Lauren: Happened very fast. I only got married like three and a half years ago.

Dr. Fox: Wow. All right. Well, you know, you work quick. It’s all good. And how was her pregnancy and delivery? Pretty straightforward?

Lauren: Yeah. So, my pregnancy with Liana was pretty much very straightforward. I delivered her the day before my due date. There were essentially no complications with either the pregnancy or the delivery. She was a nice size, 7 pounds, 14 ounces. And it was honestly a pregnancy I can say, a lot of it, I really enjoyed. I ran a 5 K a week and a half before I gave birth. My husband and I were in the middle of moving. We moved a few weeks after she was born. So, the day before I gave birth, I was actually moving boxes from my car into the new house. And honestly, yeah, it’s a great joy in the pregnancy. It was actually kind of nice. I was really excited about her birth. And everything, thankfully, went very smoothly.

Dr. Fox: And how old was she when you guys decided you wanted to try again?

Lauren: Yeah. So, she was a year old and we said, “Okay, we’re ready for, you know, number two. Be nice to have our kids around two years apart. So, let’s go for it.”

Dr. Fox: And then, yeah, what happened when you found out you were pregnant?

Lauren: I found that I was pregnant. It was last July of 2023. And Liana was 13 months old. Actually, I found out a little earlier in June. I went to the doctor the first time in July. And my first ultrasound, my very first one, I was not even seven weeks pregnant, six and a half weeks. My OB-GYN said, “Well, I have some news. I see multiple embryos.” And I thought, “What? Wow. okay. What does that mean?” And she said, “Yeah, I actually see two embryos here.” And my first thought was just this flash of, like, three babies crying. Like that was just… I thought, “I have a 13-month-old. I’m going to have two more babies. And, oh, my goodness, what am I going to do?”

And I was by myself because, with my pregnancy with Liana, it was during COVID, and my husband Avi was not allowed into any of my appointments, essentially. So, for this first one, I thought, “well, I’ve done the first pregnancy by myself. Let me just do this one by myself, too,” you know. And so, I was alone and finding out that I was, in fact, pregnant with twins. And it was a little bit dramatic, though, because my doctor said, “I see two embryos. I see one placenta, but I don’t see a dividing membrane between the two.” And at the time, I had no idea what that meant. I asked her, I said, “Well, what does that mean?” And she said, “Well, if there is no dividing membrane, then this could be a very, very dangerous pregnancy.” And I thought, “Okay.” So, I’m just trying to process the fact that there’s twins, the fact that there’s potentially is very, very dangerous pregnancy happening. And it was only two weeks later that I found out that there actually was a dividing membrane between the two.

Dr. Fox: Right. I remember that, that very early…

Lauren: You were also in that, yeah, actually.

Dr. Fox: Yeah, very early, there was a thought that they may be in the same amniotic sac. But it’s well known that very early, you sometimes can’t see that dividing membrane. So, I say, “No, wait two weeks. Come back. We’ll take a look.” And I think it was pretty clear early on that there was a membrane. But we did know very early on that they were identical twins.

Lauren: Yes, we knew very early on they were identical. There was a shared placenta. And I actually knew very early on about some of the risks associated with one placenta, you know, with a shared placenta pregnancy. That’s actually in part because a former colleague of mine who actually was interviewed by you on this podcast…I think I could say her name, Shira Billett.

Dr. Fox: Yeah, you can. She’s been on the podcast. I don’t know why not.

Lauren: Okay. So, Shira is a former colleague of mine. And she had actually shared her story with me. Like, I think it was eight years ago already when she and I worked together or seven years ago. And I remember hearing about Twin to Twin Transfusion Syndrome from her. And so, when I found out that I was pregnant with twins that were identical, that shared a placenta, I thought, “Oh, I remember there’s this risky, potential thing that could occur.” I didn’t know much about it. “I have to really, really be mindful of this thing,” you know. So, I knew very early. And I think that was actually very helpful for me when I actually ended up having this Twin to Twin Transfusion Syndrome, because very early on I did a lot of research into TTTS. I was just cognitively, maybe not emotionally, but very cognitively prepared for this possibility. I knew it was about 15% of shared placenta pregnancies experienced this. And so, I was very highly aware of this possibility very early on.

Dr. Fox: You know, it’s so interesting that you mentioned that, because in all the, you know, 6,000 meetings we had together in the past year, I don’t know if I ever knew that about you and Shira Billett.

Lauren: Oh, okay. Yeah.

Dr. Fox: That’s so… I mean, I guess I’m not surprised because you used to work in the same place and, you know, obviously she had identical twins and she had a complication. She spoke about it. You know, she had a really…it was a horrible situation. I did not know that that was swirling around in the back of your mind the whole time. Were you… Do you think you were… Because of that, you said you were more prepared. But do you think you were more scared because of how her story played out?

Lauren: I definitely was nervous. But I think more than being afraid, I think it was helpful. Because I just remembered, and I remembered she said something about how there were signs of TTTS that she was not aware of that she wished she had been aware of at the time. And so, I thought, “Okay, you know, obviously there’s only so much we can control. But whatever I can control, I’m going to try to control. Whatever I can be prepared for, I’m going to try to be prepared for.” So, it was really helpful. And I think I did a lot of research. I read a lot. And I knew that, you know, TTTS was most commonly diagnosed between 16 weeks and 26 weeks. And so, I was like, “Okay, that’s going to be the really hard part of my pregnancy, because that’s when I’m going to be really scared.” So, I didn’t expect it to happen to me. But I knew that I would be worried about that possibility very early on.

Dr. Fox: And then… I guess I know the answer to this question, but when did it happen?

Lauren: So, I was about 18 and a half weeks pregnant. And that was when I went for an ultrasound. And I was at Englewood Hospital. I already had met you at that point. And I wasn’t yet diagnosed with TTTS. But the doctor there said to me, “Listen, you have an imbalance of amniotic fluids between the twins. And that’s the first sign that something is happening that’s not good.” And he said, you know, “Your twins are very healthy right now. Their bodies are not affected at all. We’re not even in Twin to Twin Transfusion Syndrome. But there’s such a discrepancy in the fluid, it’s possible it’s going to turn into Twin to Twin Transfusion Syndrome.” So, I said, “Okay.” You know, I was very scared. I was very nervous. And at that point, I spoke to you and we had a whole conversation about it. And it was decided that I should probably have a consultation at Children’s Hospital Philadelphia just to kind of get into their system in case this did turn into Twin to Twin Transfusion Syndrome. And at that point, that was when I had scheduled my first meeting with them. So, that was last year. That was early October of last year.

Dr. Fox: Right. And we… You know, it looked like it was headed in that direction. Again, you never know, because sometimes it sort of just stabilizes. But, you know, it’s a little bit of a, you know, you’ve got a life, you’ve got a job, you’ve got a kid. It’s hard to just pick up and go to chops or like, you know, “Why don’t we, like, schedule something, like, get on the books?” You know, just they’ve met you. If it ends up being nothing, all right, you spent a day and it was nothing. But it ends up being something you’re not like, you know, scrambling to try to get in there and whatnot. So, I think that was wise. And I suspect it was.

Lauren: That was definitely wise, 100%. It was it was wise. That first, I guess it was like a less than two-week period, where we were kind of waiting to see what would happen. I essentially was kind of going back and forth between CHOP and then I’d go to Englewood for monitoring. And it sort of stayed in the same boat. Like, it didn’t get better, it didn’t get worse for this two-week period. And that may have been the most…I don’t know if it was the most challenging of the pregnancy, but that was definitely a very anxiety-provoking two weeks. Because I felt like I was really just waiting for the shoe to drop, you know. I was not sure what… I didn’t quite have this syndrome. I was heading in this direction of the syndrome. And I not knowing what was going to happen was really, really nerve-racking. I didn’t know how to express this to my work, which they were extremely understanding of everything. But I was not sure. I kind of said, you know, “I have to miss, like, Wednesday, the full day, because I have to go to Philadelphia. But then I’m back the next day. But then I have to go to Englewood Hospital. I have to miss half a day,” you know, the day after that or whatever it was. And then just trying to juggle that with just, “Are my twins going to be okay? What’s going to happen here?” That was very, very hard for me.

Dr. Fox: Right. Your work be better understanding because I know all those people.

Lauren: Oh, yeah. It was…

Dr. Fox: Because if not, I’m knocking down their doors, like, “Listen here, bud.”

Lauren: But they were they were wonderful. And I actually said this when the twins were born, I said…you know, I thank them because they allowed me to deal with what I needed to deal with without worrying about my job, and that was huge, that’s huge.

Dr. Fox: Yeah. I would say, you know, a great percentage of the faculty has a professional relationship with me. Let’s just put it that way.

Lauren: That’s true. Yeah.

Dr. Fox: All right. So, you’re going back and forth. I remember it was like two to three times a week we’re talking about, you know, getting scanned and this or that.

Lauren: Yeah. Scans, so many scans. Yeah. And, you know, I essentially what happened was, so it was this early October, and then… I always mention this when I tell people my story. It was around the time of October 7th. You know, this terrible tragedy happens in Israel. And I’ve got family there, and obviously, tons of people that I know and obviously just deeply connected to. And it was just this crazy experience of having just this communal tragedy with this personal, you know, challenge at the same time. But I always say, you know, that when this was happening with October 7th and then being at CHOP, I will say that October 7th kind of made me question humanity. But then my experiences with my medical providers really made me sort of embrace humanity again, because they were so kind. Everyone at CHOP and Englewood Hospital, everyone was just so kind to me. And so, they were just there to help me. And so, in some weird way, having this challenge and this personal thing that I was going through, just having the people who responded to it, and then my family, my friends were all just super supportive of me, that in a way restored this faith in humanity for me. So, with this interesting sort of…this juxtaposition that was just…it was interesting, it was challenging, but in a way, it was nice to have that support and that faith.

But, yeah, I had this two-week period of uncertainty. And then, I remember I had an appointment set up with CHOP, one of these cycle, within this two-week period. And I was scheduled to go on a Monday. And I just remember that Saturday and Sunday, I just…like, something in me knew something was wrong. I felt very bloated. I kept kind of telling myself, you know, maybe I’m…this is digestive or something. But I knew that that was a symptom of Twin to Twin Transfusion syndrome. I knew that feeling enlarged and just that sensation could be associated with it. I kept trying to talk myself out of it, but I knew like, “Well, I’m going to CHOP anyway, Monday, so I guess we’ll see. But something in me really knew, like, something was wrong.

And when I went… This was now mid-October, I think it was October 16th, actually, I went, and when I had the first scan and I could just see… And I already had so many scans at that point, so I was pretty well versed in what different measurements meant at that point. And I could just see, you know, the fluid level of baby B was, you know, like less. It was point something 0.2 milliliters, something really low, and that baby A had like 12 milliliter, or whatever it was, fluid ounces. I can’t remember the…

Dr. Fox: Centimeters.

Lauren: Centimeters [crosstalk 00:15:38.713].

Dr. Fox: It’s a length measurement. But, yeah.

Lauren: The length, okay. And I just remember I was like, “Oh, no,” you know, “We’re in Twin to Twin Transfusion Syndrome.” And it was hard. It was hard to process that. And then the doctor came in. And she doesn’t usually come in during the scans. But I guess she was, you know, seeing it from her computer. And so, she came in, Dr. Moldanawa [SP]. And she looked at me and she said, “I know that you can tell what’s going on now.” And I said, “Yeah.” And she said, “Well, I’m prepping you for surgery tomorrow.” And I said, “Okay, this is what’s going to happen.”

Dr. Fox: Right. And you knew that this…like, meaning what she was talking about surgery, you knew what it meant, you knew what the treatment…like, you knew what was going to be happening.

Lauren: I knew it. And that was really key. I was really armed with a lot of knowledge. I listened to your podcast with one of the doctors, I’m forgetting her name, from CHOP…

Dr. Fox: Khalek.

Lauren: Khalek. Yes, I…

Dr. Fox: Nahla Khalek, yeah.

Lauren: Yeah, exactly. And that was so helpful because it was just…it gave me all the information I needed to know about what was going to happen during the procedure, what the procedure does, you know, what happens after the procedure. And I just was able to kind of accept that this was the reality and this was about to happen because I just knew, you know, because I had all this knowledge, you know, already. So, I knew what this meant. And honestly, when I told my family, I remember, I sent a long text to them in my family’s WhatsApp chat. After we got the news that Monday and my sisters were relieved. They were like, “Okay, great, you’ll have the surgery. Great.” Like, we don’t have to, like, wait anymore to figure out what’s going on. Like, this is actually… They were like happy about it. So, “Okay, great. You’ll have the surgery and everything will be fine,” you know.

So, it was scary, but in a weird way, it was a little bit of like, “Okay, I’m not waiting for this.” I was diagnosed with stage 2 Twin to Twin Transfusion Syndrome. And the babies, I think both of them had some sort of like cardiac issues at the time, but, you know, I was told that the surgery would hopefully repair those issues.

Dr. Fox: Right. It’s also so crazy because you’re talking about, you went from not having Twin to Twin to stage 2 in a matter of a few days. And like, that’s just how serious this condition is, that sometimes it’s a very slow…you’re like a very slow lead-up, but then, like, a switch is flipped and boom. Like, I mean, you know, you can’t wait another week, half week. It’s disastrous. It’s crazy.

Lauren: Absolutely. The Wednesday before I was at Englewood, and it was still that pre-Twin-to-Twin state, and then by Monday it was stage 2. And it’s true. It really taught me, like, you need that constant monitoring, you know, because it does accelerate very, very quickly. But, yeah, so it was just amazing that I was able to have the surgery just the next day, you know.

Dr. Fox: Right. So, you went home and then went back the next day.

Lauren: I did, yeah. We were debating what should we do, and I said, “You know, I really want to go home and see my daughter.” That was really what I wanted to do. And we left. I went home. I got to see her. And we left for Philadelphia the next morning. You know, I live in Teaneck, New Jersey. So, we left at 4 in the morning. I had to be there at 6 in the morning. We left at 4 in the morning. And again, really grateful to my family. They were able to come by and take care of my daughter and all that. But in the car ride to CHOP, my husband hadn’t listened to your podcast.

Dr. Fox: I was going to ask. It’s two hours each way, good time for a podcast.

Lauren: So, I said, “You know what? Let’s listen to it now.” So, I listen to it again. And he listened to it for the first time on the way to surgery. And it was really helpful to listen to it. I really have to say it was really, really helpful.

Dr. Fox: Cool. Thank you for that. Thanks for the plug.

Lauren: Yeah, it was.

Dr. Fox: So, how did the surgery go?

Lauren: So, I remember the surgery was actually pretty straightforward. I mean, we got there, and there was a little bit of prep, and checking, and just, you know, scans again, just making sure they had everything, you know, in place. And I remember my husband walked me to the operating room and I think there literally was a line on the floor, like, guests or visitors can’t go past this line, like now it’s the surgery part. And I remember saying goodbye to him. And that was a very emotional moment because it was like I felt very supported by my family and my husband. And then at that point, it was like, “Okay.” Like, I’m the one having surgery. I’m the patient here. And this is now going to be something that I’m going to go through.” Like, “This is now my journey with these babies and the doctors, of course, and the whole staff.” But there was that line that I had to then cross, you know,

Dr. Fox: Yeah. It’s also crazy because, like, from his perspective, there are three members of his family crossing that line. It’s that brain room. It’s, like, crazy when you think about it. Like, three people are going in there, and, I mean, no one’s really…obviously, there’s always some risks, too, but no one’s really worried that you’re going to get harmed during the surgery, really. But, you know, you’re having anesthesia and you’re having a procedure and you got two kids in there. Like, it’s crazy.

Lauren: Absolutely. I think for him, it was also…I think that’s when it hit him, was that line, like, when we had to separate. Was, well, you know, he’s like, he can’t be there, you know, next to me during the surgery. And so, I think for him, that was also the moment that…it was, “Okay, this is happening right now,” you know. But, you know, the surgery itself was pretty straightforward. They gave me some sort of anesthetic that didn’t completely knock me out. And I knew this ahead of time, again, from your podcast. It didn’t completely knock me out, but it really put me in a sort of loopy state, you know. I was mostly aware, but sort of not fully aware of what was happening.

And I remember it, though. Like, I remember them going in. I don’t remember the full thing, but I remember at one point the doctor said, “Oh, wow, here’s a bunch of, like, a cluster of them,” like, “You got to cauterize these or something.” And it was true. I asked them about it after that. They had seen a group of five, I guess, arteries, veins that they had to cauterize. And they had seen just one here and there, and then all of a sudden, they see this big group of them.

Dr. Fox: Yeah. They’re basically burning for… I mean, you know, that’s for our listeners. They’re basically… Because it’s one placenta and they’re sort of essentially cauterizing or burning some of the connections between one side of the placenta and the other, that’s thought to be the culprit in this Twin to Twin Transfusion. It’s sort of, like, functionally making the one placenta into two, sort of dividing, like, this one gets this and this one gets that. It’s not exactly what happens, but sort of, functionally, it’s what it does, and to sort of prevent there being crossover between the two sides. But they have to look for those vessels and then sort of like laser them. It’s pretty cool.

Lauren: Yeah, it is. It is pretty cool. And it just… I mean, I was just in awe of modern medicine during this whole experience. Now, after this whole experience, it’s truly amazing.

Dr. Fox: Yeah. I mean, without this, you know, the chance that the babies would have survived is, I don’t want to say zero, but it’s close to zero. When you have stage 2, you know, you’re at 19 weeks or whenever it was, 20 weeks, it would have been a disaster. All right. So, you got through the surgery. How long did you stay in Philly after the surgery?

Lauren: It was just one night I had to sleep in the hospital. And I was able to go home the next day. They wanted me to stay locally, like, in a hotel for a week, just in case I needed to rush back. But I sort of made the case that I had a 16-month-old at home and I really needed to be with her. And I said to them that, you know, there are other hospitals in the area in case I really needed an emergency, but that I could also be on the roads of Philly very quickly if I needed to. So, they did let me go home after a day. And I essentially had to be on, like, a modified bed rest. I was told not to pick up the baby. And I was told not to kind of stress myself out on too long a walk, etc. It’s a kind of take-it-easy, you know, at least for that week. And again, really thankful to my employer because they were very understanding. And I was actually able to Zoom-teach during that week, which was, you know, good for my students, I think, but also really good for me to have that continuity with my classes.

Dr. Fox: You could say who your employers are on the podcast. I do want…

Lauren: Oh, okay [crosstalk 00:24:12.832].

Dr. Fox: They’ve been mentioned on the podcast before several times because they follow them.

Lauren: Okay, gotcha. Okay, got it, got it. Yeah, so The Frisch School in Paramus. They were they were just amazing. They were so understanding. And, yeah, it was tough because I knew, essentially, after you have the procedure, you get checked the next day. So, you stay in the hospital that night. I was checked the next day. And they’re not expecting to see any changes that 24 hours later. They just want to make sure the fetuses are generally okay. They’re not expecting, you know, the fluid imbalance to even out at that point. It takes some time. So, I was checked the next day. But then I knew that a week later was really when we were going to see if there was any, you know, development, any progress, you know, from the surgery. I was a bit nervous to see what would happen.

And I went back the next week after that back to CHOP. And at that point, they told me that the fluid was actually evening out, which was fantastic, and they were very happy to see that. But at that point, there were still some cardiac issues that both babies were experiencing. And one baby was experiencing something a little unusual, some tachycardia, baby A. And so, that was something they wanted me to really monitor. And they actually prescribed a medication for me to take to help baby A. And so, I ended up starting to take this medicine. I took it just for a short period, but I was on this medication.

And so, it was kind of this odd experience of I had some relief because it seemed like the Twin to Twin Transfusion syndrome was really resolving. But then I was a little nervous about these cardiac things that they were seeing. They were pretty confident that most of them would be resolved in the womb. But the tachycardia, they weren’t 100% sure what was going on and what led to that. And so, that required additional, like, extra monitoring from pediatric cardiologists. That was a bit scary also.

Dr. Fox: Yeah, I remember that was like in the 20 to 24-week period. Pretty much that month after the procedure, and you’re going to, you know, doctors all over the place at that time.

Lauren: Yeah, I was going. I ended up… So, CHOP, usually they would have released me after a week or two. And I had to be on the bed rest part for about two weeks. Some people just a week. For me was two weeks because of the cardiac stuff that was going on. But they would have really released me. But because of this cardiac piece, they wanted me to stay on board with them for a little bit. And so, I was at that point… There was, like, another few-week period where I was going back and forth between CHOP. And then I switched over to Mount Sinai to you for the OB-GYN piece. And then I was also going to pediatric cardiologists in Paramus, who was wonderful as well. So, I was back to the kind of like lots of monitoring. So, it was still in that period that… Those few weeks were still honestly just very anxiety-provoking, even though, again, I was happy with the Twin to Twin part, but that part, it was also so tough.

Dr. Fox: So, what I want to do here is, you’ve told your story from, like, getting pregnant, finding out you’re having twins, Twin to Twin Transfusion, the treatment, which was successful with some hiccups. And what I want to do is, we’re going to stop here for this week, and then we’re going to pick it up again next week for part 2 of your story to talk about sort of the back half of pregnancy, and then the delivery, then now looking back. For our listeners, we’re going to pick this up again next week.

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