“Rachel’s Story, Part 1: Losing a Pregnancy from TTTS”

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.

Rachel, welcome to the podcast. It’s so nice to see you. It’s so nice to see you in person. How you doing today?

Rachel: Great to see you. Thank you for having me. I’m doing great. Thank you.

Dr. Fox: This is amazing. And we’re going to be talking about a bunch of things, but ultimately this led to the birth of your son last year. How is motherhood?

Rachel: Oh, it’s great.

Dr. Fox: It’s great?

Rachel: I’m loving every minute, taking it in.

Dr. Fox: And he’s good. He’s behaving.

Rachel: Yeah, he’s so good. He’s like an angel.

Dr. Fox: Oh, that’s so sweet.

Rachel: Yeah.

Dr. Fox: Excellent. So, it’s been a long road to get here, and we’re going to cover all of it. For our listeners, it definitely ends wonderfully. That’s where I wanted to start, so everyone knows it’s going to end wonderfully but it’s a long road and it’s an amazing story. And I guess the first thing I wanted to ask you is before your first pregnancy, you know, you get married, you’re thinking about having a family, before all of this starts, you come from a very big family. A lot of women in your family, a lot of babies. But as you know and as I know, a lot of them had various challenges, right? Complications of pregnancy or, you know, losses, miscarriages, complicated pregnancies, complicated births, whatever it is. When you are entering your reproductive career, right, with all of that information from your sisters, your cousins, you know, whoever, was that something that made you sort of scared? Did it make you excited? Did you feel like more knowledgeable? What was going on? A lot of people sort of… We sort of enter, kind of, blissfully unaware of what’s going on in the world. Just like, “All right, whatever,” but you had so much like knowledge going into it like you were an OB when you started. And what was that like for you?

Rachel: So, I think that I was definitely young when I got married, and I was definitely innocent. And I like to have, in general, an overall positive outlook in life. And I don’t usually expect the worst to happen to me. I generally look at things in a way of like the best is going to happen. So, going into pregnancy, even though I definitely was more aware than most people of what could go wrong and what could happen in a pregnancy, I was aware of it but at the same time, I was like, “It’s going to be okay. It’s going to be good.” I didn’t think that… And even the stories that I didn’t know of things that happened to my family members, they always had a happy ending. So, even if it would be a road to get there or I don’t even think I went there, but even if it would, I always knew in the end it’s going to be okay. So, I wasn’t nervous even the first time I found out I was pregnant. I was more excited than nervous. Yeah, even knowing what could happen.

Dr. Fox: Now, what about… In your family, do you guys…are you big communicators like everybody knows when someone’s pregnant or is everyone sort of very much in their own silo?

Rachel: No, everyone knows everything.

Dr. Fox: I wouldn’t know. You guys are all over… You’re texting everybody back and forth. Okay, so did your…? So, your sisters, your cousins, did they… I mean, everyone’s different, obviously, but were they sort of sending you messages like, “Oh, you got to be worried about this. You got to be worried about that. Got to be worried about that,” or was it just much more like, “Oh, that’s so exciting”?

Rachel: No, I think… No, I think that I knew what I knew. And maybe if I had a conversation with one of my sisters or one of my family members, if something would come up and I was feeling a certain way and I knew she would know more than I did, and I would ask, “Is this something I have to be nervous about?” But it wasn’t like I went into thinking, “I need to be nervous,” right? This is something I’m expecting to go wrong and I need to be nervous about something. And I was just aware of it, and I knew to look out for things that… I knew that you don’t want to be feeling contractions too often. I knew those kinds of things, but I didn’t go into it with an overall like, “I’m so nervous about this.”

Dr. Fox: Okay. Listen, I think that’s great. I’m genuinely curious about this because I happen to know a lot of them. And so I, sort of, know what’s going on. You know, the preterm births and sort of closures and all these things that have happened. And it is fascinating because on our end, it’s not entirely clear how much of that runs in families and how much doesn’t? I mean, certain things, it’s very clear it runs in families and certain things in medicine, it’s very clear it doesn’t run in families. But with pregnancy, it’s really fascinating. If someone had a sister or has a sister that had preterm labor, preterm birth, how much at increased risk is that person? It’s not well-known. I think there’s some things that run in families, and it’s really fascinating. And so I was just… Yeah, I’m genuinely curious. I don’t think we ever spoke about this, what it was like vis a vis your sisters and your cousins and their pregnancies.

Rachel: Yeah, and I think that they had… Some of them were similar in certain ways but also different. So, it wasn’t like I was thinking, “This exact thing keeps repeating and keeps happening to each of them.” At the point when I got pregnant, it was one family member had this, one family member had that, and they were somewhat related, but I didn’t think, “This is for sure happening to me.” It was, “Okay, I’m going to be aware. I’m going to look out for things.” But I wanted to enjoy the pregnancy and just think that the best is going to happen.

Dr. Fox: Right. Now, was it your plan from the start because they sort of ended up in a high-risk practice that you were always going to end up in a high-risk practice from day one?

Rachel: So, my mother’s outlook on these things is you never know you’re high-risk until you are. So, you may as well just be there, just be in the best hands.

Dr. Fox: All right. Fair. Well, we’re happy to have you. And then now when you did start, your first couple of pregnancies were miscarriages.

Rachel: Yeah. So, my first two pregnancies were early miscarriages. So, like I said, the first pregnancy, I was just so excited. It was only a few weeks, but I was so excited. And then I had a miscarriage. And obviously I was very let down, but I remember at the same time, as much as I was devastated, I remember thinking like, at the end of the day, it’s sort of a hidden blessing because I know that my body could do this. My body could get pregnant. And obviously I’m devastated. And of course, I was so sad about it. But at the same time, I was thinking, “Okay, this is a hidden blessing. It’s hard to see it but…” And I think I knew the statistics are that most people have one miscarriage and go on to have a healthy pregnancy next. So, I didn’t think I was, “Okay, I’m going to have another one.” And then I think by the time I had another one, by the second miscarriage, I was like, “Maybe something’s wrong. Why did I just have two miscarriages in a row?”

And that’s when I, sort of, shifted my perspective a little bit. And I was thinking, “Okay, maybe something’s wrong and there’s something I do need to be nervous about.” And that’s when I went from a little bit naïve, even though I was aware, but I was still able to be excited and not nervous to maybe something’s wrong and I do need to be nervous about something. And I started paying attention to everything. I went for bloodwork. I was very hyper focused on what… There has to be a reason for this. Why did I just have two miscarriages in a row? And then the third time, I got pregnant at that point. So, I was definitely really excited because I was pregnant again and it had been stolen away from me two times too soon. So, I remember like I was soaking in every minute. I think the first time I threw up, it was like 2 a.m. and I was jumping on the bed. I woke up my husband. I texted my mother and my mother-in-law. And I think every time I threw up, I had a smile on my face because that was something I never experienced. And it’s crazy, but it was exciting to me.

Dr. Fox: Yeah, that’s so interesting. What you mentioned before, it’s fascinating when you said that the miscarriage is, sort of, a hidden blessing. And it’s fascinating because I was just literally… Over the last week, I was speaking to someone who was telling me that… So, she recently had an early miscarriage and she was somewhat very devastated, right? She had all those expectations and she was happy pregnant. She had an early miscarriage and saying that she knew that it happens and logically she understood that it doesn’t portend a horrible future. But she’s very, very upset about it, obviously. She was telling me that she was speaking to someone who she’s close with and told her about the miscarriage. And her friend said to her, “I wish I could be you,” because she was having infertility. And she’s like, “I can’t even get to that point.” And so it’s just such a fascinating perspective on things that no one knows what anyone else is dealing with. And obviously, it doesn’t make a miscarriage easier, right? It’s not. It’s very, very difficult. But there are so many different challenges that people face when trying to build their families. And I would say that people who face no challenges are really the exception, right? That’s unusual to have someone just, sort of, goes through all of this with no issues whatsoever at any point. And obviously, some issues are bigger than others but it’s just a really… It’s an interesting point. And you’re correct. In a certain sense, your first pregnancy ends in miscarriage. It’s horrible. But you also know, “Hey, I know I can get pregnant…”

Rachel: Yeah.

Dr. Fox: …which is a big hurdle for a lot of people. It’s huge.

Rachel: For sure. And it’s true. I had a friend going through infertility for a long time. And I remember thinking like after everything I went through and even after this pregnancy, even after the third pregnancy, which was the worst, it wasn’t just an early miscarriage. It was so much more than that. I remember thinking, “I know she wishes she could be me.” And I know that it’s crazy to say I felt lucky when I thought about what I went through as opposed to what other people could be going through, that they wish they even the feeling of having a pregnancy. And I think it’s also something to think about to realize what people are going through infertility, going through that, to compare… When you hear someone goes through pregnancy loss and even a late pregnancy loss, it’s horrible, and you react so greatly from it. And when people hear people going through infertility, I think that obviously they think of it that it’s sad but I don’t think they realize…

Dr. Fox: How sad it is.

Rachel: How sad it is and…

Dr. Fox: Yeah.

Rachel: Yeah.

Dr. Fox: Yeah.

Rachel: So, that is a perspective that I do think about a lot.

Dr. Fox: It definitely leads to that appreciation what people are going through when they have infertility, how hard it is because they can’t even get to that point. Now, with your third pregnancy, so you’re all excited that you’re nauseated and throwing up and you’re jumping up and down in joy because you’re puking all over the place. So, that was a little bit of a surprise also when you got pregnant, that you ended up with more than one.

Rachel: Oh, yes.

Dr. Fox: So, we’re talking about it.

Rachel: Yeah. So, I was extremely… I was excited. But at that point, I was extremely nervous also. I think, in my mind, I had to get past the first trimester because I knew after the first trimester, much less likely to have a miscarriage. So, I have these milestones in my head. By eight weeks, okay, then I can breathe a little bit. If I see a heartbeat by 12 weeks, I’ll let my guard down. So, yeah, I was definitely very nervous. I would go for a blood test and ultrasound like blood test every other day, ultrasound once a week. And I would sit in the waiting room shaking, waiting to hear that the baby is still there. And I didn’t miscarry. So, by my second ultrasound, it was in Israel. And the sonographer, it was very quick the whole thing. But I saw her looking back and forth and she said in Hebrew, “This might be twins.” So, I don’t think I even fully processed it at that point. I was just so relieved that the baby was still there, and I wasn’t miscarrying. But then I got home and I really processed it and I started playing all the twin podcasts. I wanted to educate myself and know everything. Yeah, but that’s when it really set in and it was pretty crazy.

Dr. Fox: So, you find that you’re having twins, and you’re having identical twins.

Rachel: Yeah.

Dr. Fox: And you’re in Israel. And then we got in touch, right?

Rachel: Yes, I emailed you.

Dr. Fox: And we figured out when are you coming back to America and when are we taking the baton. So, when did you ultimately come back to America?

Rachel: I think I was about 14 weeks when I came back. And after discussing it with you, that’s what we felt was best to just stay for the remainder of the pregnancy where I would be the most comfortable near my family with the medical system I was the most comfortable with. And, yeah, so I came in at about 14 weeks, and I had my first appointment with you. And everything was great.

Dr. Fox: Right. And we definitely spent a lot of time talking about twins and in general, twins and for the monochorionic twins, meaning one placenta or identical twins, colloquially typically called that. And we spoke about all the possible things that could happen. And again, at that point, just based on who you are and based on, sort of, what’s happened, were you thinking, “I’m really worried that I have a twin pregnancy,” or are you thinking, “This is awesome. I have a twin pregnancy,” or a little of both?

Rachel: It was a little bit of both. I think I was trying to push away the nerves. I didn’t want to spend the pregnancy being nervous about what was going to happen. So, I was definitely… Like I said, after the first trimester, I started letting my guard down and I actually was getting excited and thinking, “Wow, this is crazy. This is real. This is happening.” In the back of my mind, I was a little bit nervous because I knew what could happen. But again, no one thinks that. When you hear the stories of things that happened, bad things that happened, or when a doctor tells you, “This is what could happen,” no one really thinks that’s what’s going to happen to me like I’m going to be… Well, I don’t know the percentages, but the 10%…

Dr. Fox: Yeah, whatever.

Rachel: That’s going to be me. So, I don’t think I was even I was fully letting myself go there because it’s so not pleasant to go through life like that, just to think, “The worst is going to happen. The worst is going to happen,” and hyper focus on it. It’s not my personality.

Dr. Fox: Right. So, when did it turn when the worst started happening?

Rachel: Okay. So, from between 14 and 19 weeks, I kept having… I wasn’t sure with my first pregnancy, but I did feel tightening and I thought, “Maybe this is contractions. Should I be nervous?” So, I did start getting nervous at that point. And I remember I came in a few times to the office to make sure everything was okay. And they measured my cervix. And they said, “Even though you’re feeling these contractions, as long as nothing’s changing with your cervix, you don’t have to be nervous as long as nothing’s changing.” So, I was still nervous every time I felt contractions, but I was also pushing it away, “Okay, you feel it. Don’t go crazy.” There’s only so many times you could start getting so nervous and run into the office and get nervous every time you feel a contraction. I think it would happen very often.

And then at 19 weeks, it was a Friday and I started feeling contractions, but it was a little bit different. It felt a little bit more painful, more crampy than I felt in the past. So, I actually got nervous, and it was later in the day. It was Rosh Hashanah, the Jewish New Year. So, we decided to come to the office. And the doctor, it was Dr. Mobeen. She looked, and my cervix was long. I don’t know if you have it, but I think it was like 3.5. But she did say that one of the babies had extra fluid. So, I remember at that point, because I listened to the podcast, I was very educated and I knew that extra fluid with identical pregnancy could mean transfusion syndrome. But I think what I took out of the podcast was this is not what you want. No one wants to have this. But if it happens and you catch it, then we could go to CHOP, do the laser, and everything’s going to be okay in the best-case scenario. I guess I didn’t consider a lot of factors in my situation. I didn’t know. I didn’t understand fully.

So, I was nervous, but I think I was also trying to calm everyone around me down. And I wanted to tell my husband and my mother it’s going to be okay. I have a little extra fluid, but the worst case is that I’ll have to go to CHOP and do the laser and then it’s going to be okay. So, that was on Friday, and she told me, “Go home. Your cervix looks long. You have an appointment again on Monday,” because my anatomy scan was on Monday. “Go home. If anything changes, if you feel any differently, then call. But if everything stays the same, then just make sure to come to your appointment on Monday because we do see extra fluid.” So, I think Saturday night I called because I did feel contractions throughout the weekend, but it wasn’t more or different than what I was feeling on Friday when I came. So, it was Dr. Mobeen again at the hospital. And she told me, “If you’re not feeling different, then just make sure to come on Monday.” So, I came in on a Monday. This is where things start getting a little bit blurry, because I think a lot of… Till then, I was expecting a lot of what happened.

And then at that point, things started to change. But the sonographer… I kept having the same sonographer, Alhandra, over and over, and I realized she was more serious than usual and it was taking a very long time, which is normal because it was an anatomy scan for twins. So, anatomy scans are long plus twins. So, it was taking very long, but I was feeling contractions from Friday to Monday. I was definitely nervous about the contractions. So, I remember asking her, “How short is my cervix? What is my cervix measuring? I just want to make sure.” If my cervix is long, maybe I didn’t have to be so nervous and she said 1.8. So, at that point, I really got nervous because I knew that that was considered short. I knew that I had gotten much shorter also from Friday to Monday.

And then she called in Dr. Doe, who came up and she was so sweet and so nice. And she said, “I’m sorry that we have a lot to talk about today.” And that’s when I really realized this is really serious. And I think she looked at a few things herself and then she called us into her office. So, we sat down in her office, and she started explaining that there were two parts to what was going on. Number one, my cervix was short, which it’s never good when it gets too short. So, it was 1.8. So, that was one part. And the second part was that one of the twins had way too much fluid, and one of the twins had very little fluid. And I think it was stage 3.

Dr. Fox: Potentially.

Rachel: Twin-to-twin transfusion.

Dr. Fox: Yeah, I think it was 2 or 3. I don’t remember exactly right now.

Rachel: Right.

Dr. Fox: But, yeah, but it was real.

Rachel: Yeah, and it was serious. And I had a decision to make. Basically, I had a few options. I think the first thing that we needed to deal with was the TTTS, right, not the cervix. So, she said there were three options. One option is to do nothing. And if you do nothing, then none of them will make it.

Dr. Fox: Yeah, probably it’s going to go bad for everybody. Correct.

Rachel: So, obviously, on my mind, that wasn’t happening. I think on my mind the whole time, I was thinking, “Laser. Let’s do the laser.” And then the second option was to go to CHOP and they would separate… What is it? They separate the blood vessels in the placenta connected…

Dr. Fox: Yeah, it’s to essentially separate the connections between the… It’s one placenta but to separate the blood connections between the twins to, sort of, make it like two placentas. Not exactly but conceptually. And that’s, sort of, the treatment for twin-to-twin transfusion. But it’s a complicated procedure. There’s complications in this. And, okay, that’s…

Rachel: So, that was the second option.

Dr. Fox: Yeah, that was the second option, what you talked about earlier, the laser treatment.

Rachel: Right. So, she said I would have to go to CHOP, have a consultation, and they would decide if I was even eligible to have the procedure because of my cervix. So, that was the second option. And the third option was to do a radiofrequency ablation (RFA). And that procedure was to cut off the blood supply from one of the twins to give the second twin, the one that was healthier and bigger and had more fluid, to give that twin the best chance of surviving. And she told me at the time that Dr. Rebarber had said with my cervix plus the TTS, he thinks that was the best chance of me having one healthy baby. So, I remember it was just a blur.

Dr. Fox: Yeah.

Rachel: At that point, I couldn’t make a decision from those. I mean, from the first option, I knew I didn’t want to do. From those two, I’m a mother. I couldn’t make the decision to end the life of one of the babies, even a baby that wasn’t born. I knew it wasn’t something I could make the decision to do. So, I remember we left. We got to the car and… Oh, and Dr. Doe told me the next morning I would come back. We check my cervix, and we’d make the decision and we have to act fast because…

Dr. Fox: Right, yeah. So, just to be clear for us, one option is to go to CHOP or just Philadelphia, possibly have the laser treatment, though it’s not clear they would say it’s the right thing to do either with the short cervix because it’s a little complicated because the assumption is that, if you do the procedure, there might be a higher chance of going into labor, of your water breaking and then losing both babies. So, I mean, the procedure sounds like, “Great, let’s do it. Let’s save both babies.” But it’s a high-risk procedure and it might not work and you might end up losing both babies. That’s a risk, right? You could save both babies, but you could lose both babies. Whereas the RFA is it’s a choice that… You essentially said you sacrifice one baby to optimize chances for the other one. And that is… I mean, how anyone can make that decision is… It’s very hard. And people do. Obviously, people make those decisions. We make the decisions. Patients make those decisions. But it’s pretty gut wrenching, obviously. So, what did you do to process that to help guide you with that decision?

Rachel: So, I don’t think… So, I remember I went to the car with my husband. We went outside, and we called my mother. And I told my husband and I told my mother, “I can’t be part of this decision. I am not choosing one over the other. None.” Besides emotionally that I wouldn’t ever forgive myself for making that decision, I knew I couldn’t do that. I think even I felt like it was above me. It wasn’t something I had enough knowledge and enough foresight, which I guess who really does have to have enough foresight to know what’s going to happen. If the laser treatment could save both, of course, anyone would choose both. But I knew I couldn’t make that decision on so many levels. So, I said, “Talk to the doctors, talk to the rabbis,” we’re Orthodox Jewish, “and make the decision. I can’t be part of it.”

So, we are on the way home, and I started feeling… I guess I was extra nervous and maybe I was feeling the same way, but it felt like I was feeling more contractions and more crampy. So, I called the office and Dr. Costa answered, and she told me to come to the hospital. So, we ended up not going home. We went straight to the hospital. And when I got there, she checked me and I was a little bit dilated. I think it was like a fingertip or 1 centimeter dilated. And so she said, “I’m happy you came here instead of going home.” And I was having contractions very often every five minutes. And so I stayed there overnight. And I remember you called me at that point, which was really nice. You called me, and you discussed the options and you said, “Okay, so now what do you want to do?” And I was like, “I don’t know what I want to do. You’re the doctor. Could you tell me what to do?” And I think I really… At that point, we didn’t hang up with a decision. I think I stayed out of it. I think I spent the night in the hospital. And in the morning, Dr. Rebarber came in to check and he checked me and I was short… My cervix was shorter than it was the day before. It was one 1.8 the day before, and I think it was 1.4 that morning in the hospital. So, at that point, really, the decision was, sort of, taken out of our hands because CHOP, I think the threshold is 1.5 for the cervix.

Dr. Fox: Yeah, I mean, I think at that point, they probably wouldn’t have done it. But even if they would have done it, the thought was it would be such a risky procedure to do the laser. I mean, the likelihood that doing that procedure would lead you to have two healthy babies was very low at that point. And so in a certain sense, the decision was taken out of everyone’s hands like, “Okay, option C.” That’s really the only option to possibly save at least one of the babies. Yeah, so agreed. It was pretty much taken out of all of our hands. And all these things you’re talking about a matter of days. I mean, it’s not like you can… It’s not like going to the pizza store. You can’t just go to CHOP and have the procedure. No matter how you plan it, it takes several days and this or that. And so the thought is this is just going to keep getting worse, and you’ll even be in a worse situation by the time you show up there for the procedure. It’s not something that would have worked.

Rachel: And even if the procedure would work and then I would have two babies inside me with a short cervix…

Dr. Fox: You may lose them both.

Rachel: I may lose them both. Yeah, so that’s what we decided. And Dr. Rebarber had a radiologist come in from a different hospital or something.

Dr. Fox: It’s all within Mt. Sinai. It’s a different building.

Rachel: And I remember… This is such a blur. This part. I think I forgot… I mean, I didn’t forget. I came straight from the office. I didn’t have lenses, so everything was blurry.

Dr. Fox: Right, literally blurry.

Rachel: Literally blurry. Emotionally, physically, everything was blurry. I think back to that time and it’s blurry. But I ended up being wheeled into the operating room and that feeling like… It felt like… And even though I knew that I was doing this to save one baby, it felt like the worst thing was happening. I couldn’t… And I felt so horrible. I felt like I was ending my baby’s life, and it was so sad. It was really… I remember while they were doing the procedure, and I think it felt extra painful because… It’s not even supposed to be the most painful procedure, but I was in so much pain and emotionally, I couldn’t believe what was happening. And I was so… I remember thinking like I don’t know why this is happening and it’s not in my control and it’s nothing I’m choosing, but there must be a reason for it. And I knew I was making a major sacrifice at that point.

And so we did the procedure. I think they checked before and after, make sure everything went as planned. And then I went to the antepartum room to recover. And then from there, I remember, at that point, I think the goal was we were monitoring to make sure that I wasn’t going into labor from the procedure and from everything. And if everything went well and if I wasn’t going into labor, then the next step would be to do a cerclage, which even with twin pregnancies, we don’t even know if it works or not, right? So, I was in the antepartum room, and we were just monitoring. And I was feeling tons of contractions at that point, but that was expected after the procedure to feel that way. So, I, sort of, got used to it throughout the pregnancy starting at 14 weeks when I started feeling contractions to feeling them, knowing they’re there, being aware of it, timing it but, sort of, pushing it away. We checked and everything’s okay. And I didn’t make myself crazy about it each time I felt it.

So, after that… So, I think we went… The procedure was on Tuesday, the RFA. Wednesday, I just was recovering and we were monitoring. And then Thursday morning, Dr. Rebarber came in and said, “You’re having contractions but nothing’s changing. Nothing looks any…” Oh, I missed out. From the day after the procedure, we went to get an ultrasound. They took me downstairs. And I remember this was such a hard moment. They showed me, on the ultrasound, there was one baby. They showed the heartbeat and everything was well. And then they showed him the ultrasound. And I don’t think they realized that at the time because they were just doing their job and making sure that everything went well.

Dr. Fox: Right. I mean, they’re not trying to say, “Here’s your baby that’s no longer living,” but you see.

Rachel: Right, but I remember when I saw that, it was such a hard moment that I saw a lifeless baby, a baby that wasn’t moving inside of me. It was really hard and really sad. And so, yeah, so then Thursday morning, I had the cerclage placed, and I was still in the positive mode. I was still thinking, “Okay, it’s going to be good. I knew somebody that had a cerclage and everything turned out fine. So, it’s going to be fine for me also.” I remember after the cerclage, I told Dr. Rebarber, “Okay, you did it.” He’s like, “No, not yet. Don’t tell me that yet until we get…” He said, “My goal for you is to get you to 28 weeks and don’t talk to me yet,” basically. And I was like, “Okay.” And so I stayed… So, this was about… So, from Monday night, I went into the hospital for the first time. Thursday morning was a cerclage. And then I was having a lot of contractions after. So, they wanted to keep me in the hospital to keep monitoring. So, I was in the hospital over the weekend, which was really hard also, because we can’t turn on lights, we can’t push buttons. So, that was pretty hard. It was about a week in the hospital. And I think that was also… It felt like a year. So much went on, so many procedures and so much changes that it really felt like a long time. And then after, I think it was Sunday and it was about to be on Kippur. So, Dr. Inglis came in at that point. And I think everyone knew that it was really hard for me to be in the hospital. I mean, yeah, it’s hard for anyone to be in the hospital for so long. And at that point, him and Dr. Rebarber discussed what was going on and everything, sort of, was staying the same. I was having the contractions, but nothing was changing. So, they said, “Okay, nothing’s changing. Go home, be aware. Call if anything changes, but go home and rest up.” And I think the minute I left the hospital, I was like, “I have no contractions anymore. I feel fine.”

Dr. Fox: If I recall, didn’t we also do procedures to remove fluid?

Rachel: Oh, I forgot about that.

Dr. Fox: Yeah, and gave you medicine to stop contractions and lower the fluid?

Rachel: I forgot about that.

Dr. Fox: Yeah, I mean, because it was… Normally the baby with the high fluid, you would expect after the procedure, it would just start lowering naturally. And part of the reason you’re contracting is because you had all this fluid and normally just self-corrects but it wasn’t for some reason. So, we had to actually… You had more procedures. Again, it was a blur.

Rachel: The procedure to lower the fluid was… They did at the same time as the RFA, now that I remember that.

Dr. Fox: I think we did it even afterwards.

Rachel: And then again, but after this point, meaning two weeks later.

Dr. Fox: Yeah, yeah, yeah. And you were on medicine, the Indocin…

Rachel: I was on the Indocin.

Dr. Fox: …to lower the fluid.

Rachel: Every 6 hours or something.

Dr. Fox: And, yeah, it’s a lot.

Rachel: Yeah, and even the Indocin, it’s not so good to be in it for too long. So, it was a lot of back and forth. Yeah, so I had the procedure in the… While they did the RFA, they stuck another needle to take out some fluid…took out a lot of fluid, actually. And then, yeah, and then I went home. And I was actually in college. I was taking a really hard chemistry course at that point. And I remember it was the day after Yom Kippur. Two days after I came home, I was like, “Okay, I’m going to college.” And I had someone drive me and I was like, “I’m not going to drive and I’m not going to walk. And I’m going to just sit down on a chair and I’m not going to do anything.” And I think I got a beating for that one. Everyone just wanted me to stay sitting and not go anywhere and not do anything. So, that was it. That was the last time I went.

And so I think it was about two weeks from when I had… So, I was 20 weeks when I had the RFA procedure. And I think over the next two, three weeks, I came in twice a week. I was told to come in at that point to check everything. And my fluid levels were not going down. I think they were even getting higher, which was weird because usually, like you said, it goes down. So, I remember Dr. Rebarber came in one day. I was about 22 weeks and 4 or 5 days. Dr. Rebarber came in after the sonographer, checked my fluid levels and he said, “You’re baffling me.” I was like, “This is not good. No one wants to baffle Dr. Rebarber. This can’t be good.” So, he told me to… He wanted me to check the baby’s heart at that point because he thought maybe that that was something that he could think of that would make the fluid levels not go down. If there’s something wrong with the heart, maybe that’s why the levels weren’t going down. So, I went to the hospital, had a…

Dr. Fox: Echocardiogram.

Rachel: …echocardiogram and everything was fine with the heart. So, he told me, “Come back,” and either we could do in the office another procedure to lower the fluid to take out fluid. We usually do it in the office. It’s not high-risk. We could do it. “But because of everything you went through and because this is the second time or the third needle we’re sticking in, if you’re more comfortable in the hospital, then we could do that there. But it wouldn’t be me doing it.” It wouldn’t be Dr. Rebarber doing the procedure. It would be someone else. So, I was a little bit… I was like, “I want you and the hospital.” So, Dr. Rebarber was really nice, and he came to the hospital and he did the procedure for me. And I remember, after that procedure, I felt amazing. He took out so much fluid, and I think all the pressure from the fluid was… I was having so many contractions because of it. So, as soon as it was lower, I felt like I could breathe again. I felt better than I felt in weeks.

So, we were monitoring. I was on the monitor, and everything looked good with my contractions. They were slowing down. It wasn’t crazy. So, Dr. Rebarber came in and he said, “Everything’s looking… You’re not having so many contractions. It looks like you could go home.” He didn’t want to torture me and keep me in the hospital if I didn’t need to be. So, I went home and really I felt amazing. I don’t think I felt like that since 16, 17 weeks that I felt so like… I can’t explain the feeling. It was like whatever. It was less tight. And basically… So, that night I went home, and it was… I think I went to sleep a little bit late that night. This is going to be a blur. So, I think when I came out of the shower, I noticed that there were some… I was leaking some fluid, but I had remembered that from the RFA procedure, I also was leaking fluid. And one of the doctors in the hospital came in and I asked her about it. And she said, “We made a hole in the sacs, so it’s normal for some fluid to leak out. As long as you’re not soaking through a pad, then it’s okay.”

So, I was leaking fluid and, again, the same thing, I didn’t want to be over nervous. I was, sort of, pushing away the nerves, even though I had it in the back of my head. And I knew I was just in the hospital and everything was okay. And I felt this before, and I had this fluid before. So, I’m going to put on a pad, and I want to see if I’m soaking through a pad. Then, I’m going to call. And it was the middle of the night. In the middle of the night, everyone always hesitates before calling. So, it was like 2 a.m. And I also started feeling contractions at that point, and I have. It’s chilling when I look back. I think I get the chills every time I look back and I see the times when I kept track. I was keeping track 3:07, 3:15. I have it written down on my phone, but it wasn’t getting closer together. They weren’t getting stronger. And it wasn’t much different than what I had felt before the procedure. And Dr. Rebarber told me that I should expect to feel more contractions after that procedure, because again, everything that they do, it’s going to cause more contractions.

So, I was just watching. I don’t think I slept much because I was nervous. And then in the morning, it didn’t get much worse but I was nervous. So, I was like, “Okay, I’m going to wait till the office opens and then I’m going to call.” So, I called the office as soon as they opened. And one of the nurses picked up and she said, “Okay, you should come in.” And she put me on hold. And from when she put me on hold, all of a sudden, I think that’s what… I was actually in active labor at that point, and I didn’t know it. But I couldn’t talk through my contractions anymore. They had gotten much worse, and I had to give the phone to my husband. So, the nurse got back on the phone after the hold, and it was my husband. And she’s like, “I was just talking to her. She was okay. Everything was okay.” Not everything was okay, but she was able to talk. But basically, I couldn’t talk anymore at that point, and I was in so much pain. She said that we should call an ambulance.

So, my husband ran to get my father, and my father called an ambulance. My father’s actually a paramedic. So, he started an IV on me at that point, because I think my mother told him just do whatever you could to make the process faster. So, he started an IV. We waited for the ambulance to come. It felt like it was forever, even though it was probably only 10 minutes. So, we waited. And at that point, by the time the ambulance got there, I couldn’t even walk to the ambulance. They had to wheel me out on a stretcher. And we called you at that point because… And I think you were away because it was over the holiday. And my husband called you, and we were on the way to the hospital. And he’s like, “What should we do?” We didn’t want to go to the nearest hospital because we wanted to get to Mt. Sinai. We wanted to be in the best hands. But at the same time, Mt. Sinai was about an hour away, and we didn’t know if I had an hour to make it to the hospital. And I think at that point, we had to… I kept saying, “I can’t make it there. I won’t make it there.” The contractions were so painful and so strong. And I remember I have the cerclage, so I was thinking the whole time… All I knew was that nobody wanted to put a cerclage in me if I was in labor. So, the worst thing is to go into labor with a cerclage. I don’t know what I thought. I thought the worst was going to… I didn’t know what was going to… I thought I wasn’t going to make it through that. I didn’t know what was going to happen.

So, the whole time, all I was thinking when I got in the ambulance, I was telling my father over and over, telling my husband, “I need to get to the fastest place to take out the cerclage, just take out the cerclage.” So, we were in the hospital. We were in the ambulance. We drove to the nearest hospital. It was about 10 minutes away. It was agony. It felt like the longest time. And then we got to the hospital. And again, I was in a random hospital. I knew no one knew anything. No one knew how many procedures I had, what procedures I had, that I had a cerclage. No one knew it was twins. No one knew anything. So, as they were wheeling me through the hall, I was saying, “I have a cerclage. Please take out my cerclage,” because I think I thought my uterus could rupture if I had a cerclage and I was in labor. So, I was so nervous, and I knew I was in labor because I felt it. So, I felt the baby coming out.

So, I got to one of the triage room and I said to one of the nurses, “Please take out my cerclage.” And she said, “Why would we want to do that, honey?” So, I was like, “Oh, no, I’m really not in a good place. They don’t know what they’re talking about here.” That made me extra nervous, I think. And then the doctor came in, and she checked and she said, “Yeah, the head is right here, straight to the delivery room.” So, we went to the delivery room, and I kept telling the doctor, “I have a cerclage. Please take out the cerclage,” and, “Did you take out the cerclage?” I think I was being really annoying because she’s a doctor, so of course she should know. So, she said, “Yes, I took out the cerclage.” So, then finally I relaxed and I just did what they told me. You know, they told me, “Start pushing.” Before they took out the cerclage, I didn’t want to do it. I was holding it back and trying to. And then so I had the baby, and I had to push out two babies. And then after, the doctor said something like, “Okay, I just want to take out the cerclage.” And I’m like, “Wait, I thought you said he took it out.” And she said, “No, by the time you came, the head was already passed.” It ripped through the cerclage. So, that was that. I guess I didn’t have the best experience in that situation.

And at that point, I didn’t even think that there was any chance… I was 23 weeks. I didn’t think there was a chance that the baby was alive. But once I had the baby, I saw the baby moving, and I actually heard a cry, which I think is pretty, pretty crazy at that age. It doesn’t happen right away. And the nurse told me the baby actually grabbed her hand right when it came out. And I was like, “What? The baby’s alive.” And I had a whole new… I thought it was over. Once I was in labor, it was over. But the baby was alive. So, I had a whole new…something else to hold on to. And so I had the baby and the hospital that I was in wasn’t equipped to take care of such a small preemie, I think, and they only were equipped for 28 weeks and up. They didn’t have anything smaller than that. So, they were going to transfer the baby from where I was to a hospital that had a better NICU that could take care of the baby.

So, I was in the hospital. They transferred the baby to the other hospital. And my father went along with the baby. My husband stayed with me. And so that was on Monday or Tuesday. And the next day after I had the baby, they let me go home because they knew I wanted to go be with the baby. So, I went home and straight back to the other hospital where the baby was. And it was so sad to even see the baby like that. I guess it was like a slower blow because I had… The baby was alive, and it didn’t just go from one to the next so quickly, and I had something to hold onto. But at the same time, it was so painful to see the baby. The baby looked like… It was a girl. She was in pain. I remember she had red marks on her arms and her feet. And I said to the nurse, “What is that? What are those red marks?” And she said that the light from the monitor to monitor the baby’s heart rate or whatever it was, the baby’s skin is so sensitive that it was burning the baby’s skin. And I remember that was so hard for me to hear that the baby was in pain, lying there in pain. And I was so helpless. There was nothing I could do. I had to just watch. I couldn’t even hold the baby. I couldn’t do anything.

So, I think we were looking at it as we’re going to hopefully… We want to hopefully have a long road ahead of us. This baby is going to be here for a long time. And if I thought this is going to be a few days, I would have stayed there overnight. I would have slept on a chair. I would have… But I was thinking this is going to be a long road. I want to have my energy. I want to be able to be the best I could be and come in every day and have the energy to be here. So, I came for the day and I went home every day. That’s what I did. So, it was a few days. I went, I sat with the baby and then I went home.

So, Thursday, that was the last day I was there. I went to the hospital, and I sat with the baby. You always hear… The nurses are talking and saying things, but you try to ignore what they’re saying because otherwise everything is going to be really scary, meaning they didn’t tell me anything. I observed things happening within the nurses themselves. And so I went home that night. And when I got home, I got a call from the doctor in the NICU, and she told me that… It was a bunch of things. I didn’t really understand a lot of what she was talking about. There was a lot of medical terms that I didn’t know. But basically the baby needed a blood transfusion, which I also knew was normal for preemies. A lot of preemies get blood transfusions. So, it scared me. I was very scared, but I wasn’t thinking it was as bad as it was. And then the baby had low blood pressure, so they were giving medication, but they could only give a certain amount. So, she called me to tell me that that night, so I was very nervous. And then I went to sleep really nervous. And then 4 a.m., I woke up from a call from the NICU and she said, “How far are you from the hospital? I think you should come in. I think you should come in now.” And that’s when I knew it was really serious.

So, the baby was still alive at that point, but I went with my husband. My father drove us and we drove to the hospital. And I remember coming in. It felt like a scene from like a movie. There was tons of doctors in the room all standing over the baby. I think they had a mask. They were doing CPR… The baby was still alive. The heart was… And I felt like they were, sort of, holding things for me because they kept calling and saying, “How far are you? How far are you?” I don’t even know if that’s possible.

And then I came in and they said, “Do you want to hold the baby?” But I didn’t want to hold the baby at that point because I was nervous anything I did to move the baby or it would hurt the baby more. I didn’t want to make anything worse. So, I think I held the baby’s hand at that point, and I was just holding the baby’s hand and hoping the baby would feel me and something would change. And then about probably 15 minutes after we came, the baby passed away. And it was even more defeating than when I had the baby because at least then the baby was still alive at this point. It was just like it was it. The story is over.

So, I didn’t know what I would do from there. You can’t even explain what that feeling feels like. I went home, and I just cried, and cried, and cried, and cried. And I didn’t think I would ever be able to leave my room. And this was after… It was my third pregnancy. It was a long time that I was waiting for this, and it was just over. And all I was thinking was, “What now? What’s going to happen now?” And even if when I do get pregnant again, then I have to get past the first trimester, and then I have to get past the second trimester. Nothing was sure anymore. Nothing, you know? I couldn’t even be… I didn’t even feel like I could be excited the next time I found out I was pregnant, because there was so much to be nervous about at that point. And, yeah, that was really, really hard.

And I have to just compliment the practice. I got calls from so many doctors, from you, from Dr. Costa and from Dr. Rebarber. Everyone was calling me, which was so nice. And I remember I was feeling… I guess it’s part of my personality. I wanted to, sort of, comfort everyone. And even though I was the one going through something, I remember everyone that called me, all the doctors that called me, I was saying, “This was God’s plan. This is what was meant to be. And nothing could have changed.” I remember my sister was sitting in the room when Dr. Rebarber called, and I was saying that to him. And she’s like, “You don’t need to comfort him. He’s calling to comfort you.” But I just didn’t want anyone to… Because I know that every doctor that has a part in it, of course, they’re going to… Maybe they’re going to… I remember Dr. Rebarber was saying, “This is what we thought would be best.” And I didn’t want him to think maybe he did something that caused it, because, of course, it wasn’t him. This is what God wanted. It wasn’t something that any of us could have controlled. And everyone’s human and we only know what we know. So, yeah, that was a really, really, really hard time.

Dr. Fox: Wow.

Rachel: Yeah.

Dr. Fox: I mean, I think I need to take a break. Let’s do this. I mean, there’s so much more to talk about. We’re going to pause here, give everyone who’s listening a chance to, sort of, process what has just happened to you. And we’re going to pick up again next week with how you recover from a pregnancy like that, a loss like that, and what it’s like getting pregnant again. And thank God next week’s story is going to end beautifully and wonderfully as opposed to this week’s story, which was just beautiful but not wonderful. And we’ll pick it up the next week.

Rachel: Thank you.

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. 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 hw@healthfulwoman.com. Have a great day.

The information discussed in “Healthful Woman” is intended for educational uses only. It does not replace medical care from your physician. “Healthful Woman” is meant to expand your knowledge of women’s health and does not replace ongoing care from your regular physician or gynecologist. We encourage you to speak with your doctor about specific diagnoses and treatment options for an effective treatment plan.