Tag: TTTS

P: Thanks so much for coming on the show Can you introduce yourself and tell us where you’re from?

 

Tova: Hi, my name is Tova and I am coming to you from Las Vegas.

 

P: Oh lovely. Is it is it 1000 degrees there?

 

T: It is a basically about 1000 degrees. Yes. Yes Today is particularly hot I think perhaps the hottest day

 

P: so today’s episode is on abortion, which is a tricky topic and looking for people to talk about it in 2022 There’s still a lot of shame around it, which I’m disappointed to see. I’m  the mother of two teenage daughters. And I hope they don’t grow up with the same context that many of us grew up with. particularly unfortunate given that abortion is relatively common. I think the numbers I’ve seen and suggested that on average in the US there’s something like 6 million pregnancies and just under a million abortions a year. I’ll put links to these numbers in the show notes. Having said that, I only know one person who’s had an abortion and I only know about that because I was there right

 

T:  that you know you only saying that I know of right which can’t be right. 

 

P: Like can’t be right. There must be people around me doing that. So I appreciate that you have offered to share your story which is a little bit of a of a different version.

 

T: I think it’s probably a lot of a different version. But yes, yeah. Well,

 

P: I’m imagining that most people who have to make this decision when you did have to do it for similar kinds of reasons.

 

T: Yes, yes I. At this, you mean at the stage of pregnancy where I was when I met my students? Yes, I believe most. Most, if not almost all people who get to that point, though I can’t speak for everybody and I personally know from not only my experience, but then post my experience the women that I connected with which were a huge part of my story. My journey as they say,

 

P: so do you want to sort of walk us in is Was this your first pregnancy? It was not.

 

T: No, So this was my second pregnancy. My oldest I was married my oldest daughter was just about one years old when I got pregnant. Me and my husband. We had a plan as everyone does that, right. That’s what the whole show is about. 

 

P: Yeah. Yeah. 

 

T: Like we’re gonna have two kids. We’re gonna have them close together. They’re gonna be best friends. Yeah. And then we’re done. And then we’re like getting back to life as usual. That was our plan. And so we had our first daughter that pregnancy was a little there were some issues that came up but ultimately everything was okay. And then as soon as she turned one, we were like, Okay, let’s get working on the second. So we can get through that we had decided like on her first birthday. We’re like that’s the start to try. I also apparently in retrospect, doing some dad got pregnant on her birthday. 

 

P: Wow. 

 

T: So like, we were like, Okay, let’s try and that second pregnancy turned out to be identical twins. They were girls, which was really surprising because that stuff happens to other people and not that it’s not hereditary identical twins is completely random. They say and there are no twins not there’s definitely no identical twins in my family like I don’t know any.

 

P: So how far along Do you find that out? Is that eight weeks or 10 weeks or 

 

T: we found out? I was like literally already showing it five weeks? Like I’m a little girl and I was like, this is weird. And I joke to my husband the night before the first ultrasounds like five or six weeks, you know, I was like, Oh my God, why am I already showing like is this gonna be twins and then lo and behold, we shut up at the ultrasound. And they relied like that. 

 

The tech didn’t know how to communicate, and was like, Oh, it’s twin… There’s two and I was like, What are you talking about? No, you’re mistaken. And my nose was like, yeah, no, we’re no, she’s like, No, there’s no there’s the one and there’s the other but I don’t see a separation between them. She said. I was like, What the hell does that mean? Like I don’t know anything about what you’re talking about. 

 

P: And it sounds like conjoined twins. 

 

T: And that’s what I said. I said what are they like, conjoined. I was like, she looked at me like I was the idiot. And she said, No, there’s supposed to be either in two sacks, but we’re not there in the same side. And there’s supposed to be a membrane between them. But I don’t see it. You have to get a higher level ultrasound to see the membrane. I said, Well, what does that mean? And she was like, well, basically, if there’s no membranes, really high risk. And you know, it’s basically a done deal. I’m sure. I’m sure it’s there. We’ll send you for the ultrasound. Like yeah, yeah. So immediately, I went home and I was like, Hello, Dr. Google. 

 

P: Yes. 

 

T: And I started immediately learning what the risks were a if they don’t see the membrane, and then everything else that falls into that pocket have identical twin pregnancy complications and it’s a big bucket. 

 

T: Okay, a little twins anatomy here. Baby sits in a sack connecting to the placenta with an umbilical cord. That SAC has two membranes and inner one called the amnion. And another one called the Korean majority of twins have their own placenta and their own amniotic sac. twins who share the amniotic sac, so no inner membrane separating them. Also share one placenta 70% of identical twins share placenta, but only 1% share both a placenta and a single sack. Sharing a placenta the source of nutrition and oxygen and waste removal can cause issues Tova will talk about some of these two I wanted to outline our resource sharing and blood supply with resource sharing. The umbilical cord that connects the babies to the placenta can attach the placenta in different places. If they attach it away that doesn’t share the placenta evenly. The fetuses can grow at different rates. Second issue is that when those two umbilical cords send out blood vessels into the placenta, these vessels can grow together, meaning twins will be sharing their blood supply, which can lead to issues 90% of the time, it does not lead issues and everyone’s fine and 10% of the time, it does lead to issues.

 

T: So when there is no membrane, the probability of those cords getting wrapped around themselves and each other tied in knots and everything is tremendous.

 

P: It sounds right, that makes sense. Right? And so that’s the risk. That’s what’s creating the risk. 

 

T: That’s what’s creating one of the risks Okay, all right. So then the membrane they went for the higher level ultrasound they saw the membrane so that mitigated the risks of the take most of the risks of the tangling, all the risks are still there to a degree, but that main tangling up

 

P: just a quick word here before we dive into some medical terminology. There are three different categories to describe how to ensure the amniotic sac and the placenta, die, die mo die, and Momo die die is like to singleton pregnancy sharing the uterus. Everyone gets their own amniotic sac and their own placenta. Mo di refers to monochorionic di amniotic twins, so one placenta, but each baby gets their own amniotic sac vomo refers to monochorionic mono amniotic twins who share a placenta and a Sac

 

T: so hours were Momo that’s what they call them. A one placenta one sack but it did have the membrane the primary risk when you have a Momo identical twin pregnancy is that the placenta itself isn’t feeding into both umbilical cords evenly, and that the blood flow flows through the placenta from one baby into the other. Or that there’s you know, the veins and arteries across the surface of the placenta they overlap and where they overlap things don’t always go where they’re supposed to. One baby generally would get more of the blood and nutrients and one baby would get less. So both babies are at risk, one for overload and one for deficiency. And when that happens, it’s called twin to twin transfusion syndrome or TTTS. At the time, this is 13 plus years ago, it was very hard to find people who knew what they were talking about very hard. Even the doctors there were there were like three doctors in the country who say that they understood this disorder and it was so rare. And I would say one of the biggest points of pride or just a positive outcome from my experience and the collective experience of a lot of women or families that experienced this at that time or since then, is that we found each other and collectively that community has made a huge impact on awareness and Doctor knowledge and ability to treat this. So that’s a little sideline 

 

P: that’s amazing. 

 

T: It was amazing because back then like it was like finding a needle in a haystack. I don’t know if it’s just that I’ve been in this haystack. Now that I know I can see all these needles, but I can get to that to 

 

P: you guys find each other on Facebook. 

 

T: It was pre Facebook groups. There were there was a twin to twin transfusion message board and anonymous message board, which is where I started and there was just a handful of women who were like I was just diagnosed, they don’t know what to do help. I mean stuff like that. Now now it’s all on Facebook. So anyway, we we found that we were pregnant. I read all the research on TTTS. Ultimately, the goal was not to get it right. Like ultimately, if the placenta is doing its job, right baby a baby B they’re both thriving, all is good. So I found a new doctor. We saw him I think at like 12,13 weeks, and he was like oh everything is good. There’s a membrane I have a picture. It’s beautiful. One baby on top of the other. They look like they’re in bunk beds. And they were like, right, he’s like, okay, come back in four weeks. We’ll see how they’re doing. 

 

So we came back at 16 weeks. And he saw the very first morning signs of TTTS. So the first warning signs are an imbalance of fluids. So each baby surrounded obviously there’s a membrane and you want each sack to be about the same. And one of them was smaller one of the sex was a lot smaller than the other. And he basically said here’s the deal. At this point at 16 weeks, they’re already showing it imbalance This is most likely going to develop into TTTS and you’re probably going to lose them both. And if you don’t, they’re probably both going to be born with like severe disabilities and you don’t want that I imagine so you probably want to just terminate the pregnancy and I’ve done all this research. Yeah, I was like well first of all, I know that there are like treatments for this. So there was this laser treatment, which was relatively new. At the time, there was like an amniotic reduction which removes some of the amniotic fluid from the baby that has more to allow for self correction and the other baby to get like there weren’t things and I was like, can we talk about those things. He’s like, they’re probably not going to help too much. And he’s like the laser surgery like nonsense. Like, okay, like, is it even possible to terminate one in order to save the other? 

 

P: Yeah. 

 

T: And he was like, no. I was like, what? I read it on the internet, like, 

 

P: yeah, yeah, yeah,

T:  what are you talking about? So I was like, we can’t talk or be doctor. It was really, like I’m joking, but it was obviously horrifying. And then he literally said, I have to go teach a class now. I won’t be here in two weeks. I have vacation. So you’ll come back in four weeks and we’ll see if everything’s still okay.

 

P: That’s a weirdly long leash. 

 

T: Yeah, he basically was set and then he left he left us in his office to go teach a class B my husband sat there looking at each other like, what just happened? Sorry. Yeah, a lot of curves and you’re totally allowed to curse. Yeah, I was like, what what?

 

Like, like, basically you said, Come back in a month and we’ll see if your babies are dead yet. I mean, that’s what he said to us. Yeah. We were like to find a new doctor. And we ended up going to New York to Presbyterian Hospital where they had an expert on staff who was one of the few people trained in the laser surgery that is used to ablate the overlapping veins and arteries. On the surface of the placenta or otherwise deal with high risk pregnancies of this type. And we started going there. And we were going every two weeks.

 

P: Was that prognosis more positive? Did they think the pregnancy could still work out?

 

T: They did all the ultrasound the high level ultrasounds, all the things and I’ll be honest, it was so early, they were excited air quotes since we’re not going to see me but they were excited for my case, because they believe these things to be so rare and they had just started like the guy who technically was trained in laser had just finished his training in Europe on how to do it. And he had never actually done one yet here in the States. So I was like, his potential to to do this big surgery. The way TTTS progresses is in in five stages, or five stages. The first stage is an imbalance of fluids. This second stage is when the imbalance maybe reaches certain measurements like they would measure the widest gap of a fluid in the baby that was more tightly packed. And when it hit a certain stage, you were officially stage two when a certain measurement then and this was back then, not only has it hopefully changed, it probably has changed but we change these layers. So they would not do laser surgery unless you hit stage three, but we were not there. 

 

P: Yeah, 

 

T: we were basically at stage one, one and a half and he was like this is good news. You know, we’re going to monitor this carefully. We’re going to do high level ultrasounds throughout the pregnancy, baby B had a lot of fluid and baby A had less but baby it had she had a healthy amount of fluid. It was just less the secondary and third signs were like kidney failure because the baby was less the kidneys fail to develop. So when they start seeing that there’s other secondary signs and I had none of that. I was all wet all of it was just a fluid imbalance. So I was coming in. Believe it was every week, maybe twice a week, driving into the city paying $40 to park high level ultrasounds, keeping an eye on it. And the thing that we knew was that if we were qualified for laser surgery, we would do the laser surgery. We talked about doing an amniotic fluid reduction. 

 

P: Yep. 

 

T: But some people had done a fluid reduction and then subsequently did a laser surgery if they still needed it if the amniotic fluid reduction didn’t work, but the amniotic fluid reduction increases the risk of rupture, and so they don’t want to do it if a laser surgery has the potential to be needed. 

 

P: Yeah, 

 

T: especially in my case where they were super excited to maybe be able to do it. They didn’t want to do an amniotic production. They wanted to wait and see. 

 

P: Yeah. 

 

T: Because if it stayed and each baby was developing well and their kidneys were developing well, and there were no secondary signs we were we were good and we were aiming for 24 weeks, like the bare minimum, because also they said and again, I think they know better because of the accumulation of parents who voiced their experience. They said after 24 weeks, the risk goes down. A lot of anything happening, whatever. It’s not true, but that’s what they said. So we were aiming for 24 weeks.

 

P: God This feels like a bit of a sprint. 

 

T: It was horrible. It was I mean it was it was just like in the thick of trauma day after day after day not knowing and you’re like you’re living and your body is doing this. And you don’t know what’s going on in there. Like you’re just like I don’t know, you just don’t know like day to day is was it where’s the fluid? I’ve been like feel does it feel fluid on the right side or like what do I know like and then they’re not doing anything but watching it. Right? Right? If we had the laser ablation and they each were just getting 50% of the placenta and they were kind of functioning on their own things. And one died, it would suck, but it wouldn’t affect the survivor. 

 

P: Yeah, 

 

T: since we couldn’t get the laser ablation we never qualified for it. We knew if God forbid one died, that would create basically a de oxygenation of the blood in her system, which could then flow through the placenta into the healthy baby and shut her down you know, create damage of some degree and you don’t know don’t know the degree, you don’t know anything. You don’t know anything. That was it. That was our that was our situation just after we go get the things consistently. The baby that had more fluid, they were like she’s fine. The baby that had less fluid was the one they were more concerned about. They were like She’s good. She got like two and a half centimeters, the other one had like 12 or 13 centimeters. Again, my numbers might not be 100% but they were optimistic. And then at 23 weeks and 2 days maybe I went in for my weekly ultrasound. And I was feeling actually really good because the pressure on my stomach was less than it had been and I was getting bigger and I’m small I’m like maybe 5 foot one and so it was a lot, a lot of carry weight. And we went in and did the ultrasounds and they were like, oh, have you eaten anything? And I was like, I’m like okay, and the doctor came in and basically he was like so the baby with the more than one they weren’t worried about died. 

 

P: ugh

 

T:  sometime between our previous ultrasound which was like five days earlier and that day she had died. And so that’s not anything more profound to say. It was horrible, horrible, horrible,

 

P: so unexpected.

 

T: It was very unexpected, because for the first time I was feeling good, of course I was feeling good. Because her fluid level because we’re in so anymore because she wasn’t super fluid. Yeah. And so the baby they were more worried about Baby A. She was doing fine on camera. But there was no way you know, her fluid levels were more balanced now. But there was no way to know what happened to her brain. 

 

P: Yeah, 

 

T: which is where the damage would have happened at the impact of the death of her sister. And so we were at like I said 23 weeks and it was 23 weeks and five days.

 

P: Oh my god,

 

T: we discovered that. And they specifically by the way, scheduled that appointment before the 24th week when they were scheduling it, they look at the calendar, they look at my dates, just because of all the impact that those numbers have on so many parts of this process. So basically they said to me, so here are your choices. And we I mean we obviously had discussed this at length throughout the prior weeks like what happens if what happens if what happens if what happens if and we had decided that without the laser surgery. If one of them passed away We were going to terminate because the risk to the survivor was too great. 

 

I mean, and I was in the at this point. I knew women who had had their twins and last one and a half survivors who had severe mental and physical handicaps. I mean across the board from similar situations. I didn’t know a ton, but I knew enough I had seen even the ones who some of them who had the laser they’re survivors still had issues. But there was one in particular as the woman in Europe who her her daughter at that point was maybe eight or nine her survivor and I mean it was heartbreaking but she was going through raising this child could not was Yeah. And so we had 24 hours to make a decision because they needed to start the process on the 23rd day 33rd week and sixth day in order to fall within 24 week guidelines of New York City. And so that’s the decision that we made.

 

And that’s what we did.

 

I guess you might want to ask a question.

 

P: I’m so sorry. are covered with goosebumps that’s so traumatic to make it that far. And I think I wrote to you that we had a very touch and go pregnancy till the very end and then she they took her early she had open heart surgery. We never talked about it. 

 

T: Really 

 

P: we never talked about what happens or what it was too scary for some reason. And this is a complete fantasy. I’m imagining that articulating it puts it out in the world in some way that I can’t manage. Right so

 

T: I would agree with you there the the talking about it. I make it sound like We’re so mature and coming to the table like two thoughtful adults. That’s not exactly what it looked like. I mean, I think with with the twins having our daughter at home, and she was like one and change at this point and she was not an easy child. Or an easy teenager but I just knew I couldn’t. I couldn’t manage I wasn’t equipped and I wasn’t going to burden her with that. My sister in law has a special needs daughter who is high level needs not high level. Like she needs a lot of help and still not as much as many other you know special needs kids. And I look at my sister in law in Awe, I’m not equipped for that I am far too selfish, if that’s what it is. And I’m like, No, well,

 

P: are you making this decision for your daughter as well? Right. So,

 

T: I mean, I’m making the decision. For everyone. My marriage, my daughter, my future like thing and and even I hate to say it in a way but like for in my situation where they were twins that were bonded. Like there was something about them being able to rest together that brought me peace. 

 

P: Yeah, yeah

 

T:  I mean, I know that for a lot of people in my circumstances. Obviously you just don’t want one. If you can have one you’ll yeah but considering all of the all the moving parts of this, you find comfort where you can 

 

P: Yeah. 

 

T: And then there was comfort in that you know that they come together

 

P: and you did everything you could right You did everything at 7 million appointments and different doctors and you know kind of tracking you down and doing your own research and finding the people and

 

T: I mean, we knew more than most of the doctors, even the specialists. And in the months and years afterwards, the amount of work or like I was saying achievements or knowledge that has happened in this so rare again, air quotes because you can’t see them. It’s not as rare. As one might say it is rare, but it’s not that rare. 

 

P: Yeah, 

 

T: I was saying that we only at the beginning when I was pregnant. It was 2009 basically 2009 so I guess Facebook existed but didn’t really have groups and stuff like that. And the message boards that I was on were anonymous message boards on other platforms you just find it like and and what I noticed on those boards and they had sub groups and stuff, but it was almost like people would come in and say help I got a diagnosis. I don’t know what to do. And people would come on and be like, Oh, you’re gonna be fine. I got my diagnosis last year with your pictures and my beautiful twins. They ended up fine we got the laser everything’s fine. You hear a lot of that it’s gonna be fine because in my case, it was fine. 

 

P: Yeah. 

 

T: In the years post our loss, a lot of those groups started to reform on Facebook. 

 

P: Yeah. 

 

T: And a lot of the people from those groups that were anonymous in those groups, now we’re showing up not anonymous. On Facebook, in new groups. And it was the same pattern where somebody new would join the group and say, Oh, I just got a diagnosis. I don’t know what to do bla bla bla bla bla and people would chime in, everything will be fine or now. They ultimately I mean, they said other things too, obviously. But what I eventually started to realize was that you would sometimes see these women who would post and you would follow along we had our appointment above and then they would post bad news. We lost them both we did the surgery one was fine and then the other day, and then you would never hear from them in the group again. 

 

It’s not that they weren’t there that nobody wanted to hear from. Right. Like if you’re a new mom and you’re like, Oh no, I just got a diagnosis. And you’re the mom with two dead babies. You’re not gonna be like, Oh, everything’s gonna be fine. But my babies died..Right? So those women became invisible in the group, except when people would post pictures of their identical twin and it was hell on earth. 

 

You’d be scrolling your feed, already grieving your heart out and then identical twins, which is like the number one trigger like you see that? And it just, it just breaks you. So people would ask to not post pictures. And then the people who had survivors, they’re like, Oh, well, we should be able to post pictures of our children. Because we’re so proud and happy. We want to give hope to other parents who are currently pregnant and we think our picture give hope. And we’re like, no, like you cannot do that. It’s like trigger warning there. was a big rift in this community. And I have a big mouth Jewish mom was like, Fuck this. This is not working for everyone. So I posted and I was like like, I was like you cannot be posting this. It’s too painful. And they basically said, Well, if you don’t like it, go start your own group. 

 

So I did I started a group for those grieving a TTTS loss. There’s well over 1000 Women in that group now. 

 

P: wow

 

T:  there’s a lot and that’s obviously just a small fraction of the families who go through this are the ones who are having a find on our group on Facebook, but it is through that platform that these families have been able to come together and compare notes and learn that there’s more than just twin to twin transfusion syndrome that there’s another variation called TAPS, which is they used to call the acute TTTS Where it suddenly showed up, like the baby died, where now you can see warning signs and you can test different blood levels to see indicate like none of this information existed. We have parents in that group who are vocal proponents and teaching and connecting with the biggest doctors around this so that they know better and can do better and train on this It is it’s through the families. It’s through the parents who connect and the ones who go silent in the main TTTS group because they’re like, no one wants to hear from me. And so we I created this new group, this new platform, I don’t run it anymore. I like handed it off to like after like seven or eight years because you can only hold on to that for so long. But I’m still in the group. Occasionally it’ll pop up

 

P: going through this process. Do you go to the hospital you have to go to like Planned Parenthood or 

 

T: Well, in my case, so I was 23 and a half weeks I went to the outpatient portion of the hospital because it’s a three day process by the way, it’s not like so you go the first day I went and they in my case, I inserted a needle and they stopped her heart with potassium, I think immediately so it was quick and painless. And you can see it on the monitors for me, obviously, and scary and all the things, but again, I was comforted by the knowledge that she felt no pain. She got to go surrounded by my wombI mean that she would not have to be born. I know people who you know know their baby’s not going to start and I respect everybody’s decision to do what they need to do. But for me, being able to know that she never do anything but the comfort of my body and my love. That was big. 

 

And then they are they give you like seaweed insert to dilate you and you wear them. They come back the next day to see how dilated you are to just basically go home still carrying in my case two babies. And then 48 hours later I went to the outpatient portion of the hospital. They had asked me if I wanted D & E or if I wanted labor and delivery but they and my husband highly discouraged me from going through labor and delivery because it would be in the hospital with other moms who are laboring and delivering. And also because I knew I wanted to have another baby. I don’t want that. 

 

P: Yeah, totally

 

T:  to tarnish my future labor and delivery with with with my future babies. That being said of all the decisions we had to make throughout this entire pregnancy. That is the one that stuck with me as perhaps the only one that I wasn’t sure I made the right one. But I don’t think there was a right one. So I don’t know that I made the wrong one. I just I made that decision. I wasn’t aware when you do a D and E or D and X at that point. I went in they walked me into the operating room. They basically knocked me out and I woke up 17 minutes later and the babies were no longer in my body. That’s the process as far as what I experienced. The babies are not fully intact that I did not know had I known that on know if it would have been I don’t know I don’t know if it would have affected 

 

P: your questioning whether you should have gone through labor and delivery. 

 

T: Yeah. Because in the aftermath of it, you feel crazy, right like okay, there’s the grief. And then there’s the what a fucked up story. Like you tell that story you’re like that can’t have possibly happened. And I had no evidence of them. No evidence of them that was what I didn’t have. So I was especially so what do they do with the babies? Right, so in most cases, the hospital respectfully disposes of the remains. And at that point, I could not, I could not make decisions. 

 

P: Yeah, 

 

T: and I was like, okay, like, I keep I don’t know, just do what you normally do, I guess, right? My biggest piece of gratitude is that somebody in my family who had had miscarriages were Jewish. I’m not the most observant person, but they were like the babies have to be buried in a Jewish cemetery. I was like, I don’t fucking want to know anything about what you’re talking about. Like, I was still praying it was in those two days. 

 

P: Yeah, 

 

T: she was like they have to be buried at the Jewish cemetery. And I was like, leave me alone. If this is important, do arrange it. You go call whoever needs to call my in laws, the doctors. I don’t care. But I don’t have the I don’t have the bandwidth for it and figure it out. Because I’m not dealing with it. The only thing I did do is I said to them at the hospital. I said my family is taking care of it so that somebody’s going to make sure they’re buried in a Jewish cemetery. And they were like, oh, so we should just like, refrigerated or whatever. I was like whatever you do, I again, yeah, zero bandwidth. So after everything was said and done, I’m back at work, right? an entirely different person than I ever was everything I ever knew everything I ever was everything I ever thought. Everything I ever saw myself as like not anymore. And I had no proof like people are treating me like I’m normal and there is nothing friggen normal. But did I imagine this? Like I literally started thinking did I imagine this? Did this really happen? I did. It’s that’s a pretty disturbing kind of place to be. And then I called my mom and I said by the way, where are those babies buried and she you know, traditional Jewish history historically does not allow the mom to know these things. Like they think it’s better. Like oh, just pretend it never happened. Because Are you sure you want to know? And I was like I am 100% Sure. I was at work and she told me the name of the cemetery. And I Googled it. And there’s a search bar on the website, where you put in a last name and find out where anybody at that cemetery is buried. So I put in my last name. It popped up fetus A and fetus B. It was literally the first real world acknowledge meant that they existed. Was this our website? Not the original question, but the original question was about why the labor and delivery versus the D and D are just

 

P: because you wanted it to feel real. So that’s, that’s a legitimate that’s a legitimate thing. And the other thing I was gonna ask is, if you have any rituals around the loss, I know in Japan and probably other places there are rituals around miscarriage and stillbirth and abortion so smarter we don’t have that really here. There’s nothing

 

T: in the communities that I’m part of people will do like the balloon floating things or they’ll celebrate a birthday steal or some of them will. They’ll buy gifts. They’ll go with their living children buy gifts on that baby’s birthday, then donate them. That’s really nice. Yeah, there are beautiful rituals. That people families create for themselves. I didn’t I have my own private things that matter to me even to this day. It’s been 13 years I wear a necklace with a little sun and a daisy on it, which were their nickname sunshine and Daisy. I mean, Its the only piece of jewelry I wear I never take it off. I think part of it was my husband was very much like a thing happened and now we’re going back to our life. You know, they deal with it differently. He even actually got close to an acknowledgement of actually grieving for years. I think there was like he was thoroughly there to like, support me and protect me or give me the space I needed all the things he thought he was working doing for me, but if you asked him were those your daughter’s key would be like No, I think it was probably at least it’s been 13 years. I think it’s probably seven or eight years before I ever heard him. Even acknowledge them in a slightly more personal like he finally got a space to kind of process it and it happened quickly and quietly. It was only like something I kind of tuned into going on with him. So for me to like do a ritual felt annoying or like you know that it required other people’s involvement 

 

P: Yeah, 

 

T: you know, it was it was.

 

P: I totally relate to that. And I, you know, my daughter survived and she’s 20 now and I did not use the word dead for 10 years. I couldn’t use the word but all through my pregnancy. They’re like oh, she’s definitely gonna die. She’s not gonna make it. She and I and I literally could not use the word and her name and a sentence for 10 years after and it worked out.

 

T: Right. Yeah. I fully, fully relate to that. Yeah, there’s there’s certain words constantly like they just you make those associations and there are unbreakable that said, 

 

P: Yeah, 

 

T: but um, yeah, so I did find so much of my own healing feeling or voice. My healing came from using my voice. So for instance, I like the doctor that was so excited to do the surgery but never got a chance. He was a young doctor, he was very ambitious. He was nice guy. He was kind he’s also the doctor that did the abortion. And he you know, he would call and follow up with me afterwards called to see how I was doing. It was really nice. And about a few months afterwards, probably around I saw I went to the cemetery about six weeks, probably within the timeframe of that, I decided to write the doctor a letter I wrote him a four page single spaced letter typed sharing my experience after because a he was with my husband on team like, let’s just do the DNX you don’t really want to see those babies and and that and then also the other women who I was connecting with online who whether they had labor and delivery or some of them also had they would get handprints and footprints like the hospital had a process and I told him we should have to and actually then he called me and thanked me profusely because like you know, sometimes get a car but I never get something like this. This is so meaningful and touching that you took the time to write this. And he’s like and you’re right. He said if you if when we send a patient to the hospital, knowing they’re gonna have a stillbirth. There’s a whole plan in place for capturing the lock of hair and the handprint and it never occurred to them in these circumstances to do that, in fact, the place where I went to have the actual surgery where they removed the babies. It’s like one of those multi surgeries. You’re sitting there with a bunch of other people getting their, you know, ingrown toenails like worked on and just the sensitivity meter was so off as like out to here, walking into surgery. In this. Yeah, the girl that the nurse walking me down the hallway like I was crying, and I sniffled. And she turned to me and she said, Do you have a cold? It’s like, no, yeah, I’m crying. What so stuff like that? 

 

P: Yeah, yeah. 

 

T: In the surgery place. There was like a feedback form. Like after my surgery, they gave me apple juice and some crackers. And I was crying and they gave me these tissues and the tissues were like sandpaper on the feedback form. I was like, maybe try some soft tissues. Your tissues suck.

 

P: Yeah, yeah. Something comforting, right? 

 

T: Like be comforting. Yeah, I just found like, the more I opened my damn mouth, the better I felt. Yeah, about like making it better for the next person, right and next person who goes through this, give her some Kleenex instead of sandpaper, right, the next person who goes through this don’t let the nurse say something so stupid. Right. And, and that is really what fueled basically my last 13 years. My whole life, everything. Everything became about how can I take this experience and use it for every little bit of good that I create from this it to a degree and it’ll never fully but to a degree amortizes the giant pneus of my loss. And specifically also I’ve been on a mission. You know, I started a business after this a whole women’s empowerment brand around helping these women that I was connecting with refind their light and their joy after grief and trauma and pregnancy loss and infant death. And each little piece of that puzzle was a piece of my healing and a piece of making my loss worth it and a piece of justifying the choice that I made. And I realized that early on that if I had followed through and continued to pregnancy and my daughter was born with all the disability any of the all of it my whole life would have been derailed. And it would have been about raising this child about helping my other daughter cope with a disabled sister. My marriage likely would have fallen apart my finances would not have worked all the things that these families go through. Thankfully, because of a 24 hour window, I was in a position to make that decision for my family.

 

P: Yeah, 

 

T: and I’m grateful for it every day. Because every day, even now I try to live my life, making that decision worth it, whether that’s building the business to make other women happy, or showing up at the coffee shop with a smile even if I’m having a shitty day because I know it’s going to impact somebody else. Everything good that I can do is in justification of the reality that I’m not home taking care of a disabled child for the rest of my life. The price I paid to have a beautiful, easy life is a huge price. So this would be paying it forward.

 

P: It is an amazing way to memorialize the twins. to live that goal the time.

 

T: Yeah, you know, I used to when I was doing the work working with those moms, a lot of them would get so trapped in their grief. Because the grief became the link to the baby to the child right if they if they if they somehow move out of the grieving stage. It’s like they’re leaving that that baby behind and their memories behind or they forget or it’ll show that they don’t really love that baby. So much of the work I did was trying to let them see that it’s not that you’re leaving the baby behind. The baby is pushing you forward. Like do to live find beauty you’re here. That’s what they want for you and to be able to celebrate life and marry that concept to the memory of that child instead of the grief to the memory of that child. It’s so much better. It’s just better. 

 

P: Yeah, 

 

T: that’s what I had done actually with for me with with this. I got pregnant very quickly after the after the twins died. So they died in September. I was pregnant again by January with my youngest, so I’m not a waiter. I’m not 

 

P: so on purpose. 

 

T: Oh very much on purpose. Thank God Yes. Like literally literally I woke up after they knocked me out for to remove the babies from my womb. I fell asleep crying. I remember and I woke up on my husband was standing above very first words out of my mouth where I want to be pregnant again. And I don’t know if I met pregnant with them or like let’s get the show on the road because 

 

P: yeah, yeah. 

 

T: Unfinished business. I don’t know. I don’t know which I’ve never but those are my first words. And through that pregnancy, I was very much obviously still very much in grief. And I proactively was looking for light. So I had a visual of this new baby inside of me I felt dead on the inside. Just black. So it was like everything below skin level. And then when I found out I was pregnant, it was like again, the visualization of this tiny teeny tiny beam of light inside of me that was just trying to grow like trying. And so I started wearing sequined clothing to visually connect myself and my outer skin to that tiny little bit on my deep deep inside. And that’s kind of the platform that actually fueled the whole business I created was like this idea of joy and light on the outside being a catalyst to connect your joy and light on the inside. 

 

But for two years straight straight through that whole pregnancy. Two years straight. I don’t think there was a single day I didn’t wear something sparkly even on like my crappiest days and I came to fully connect, that proactive seeking out of joy with my twins. I mean obviously there were many many, many, many days where I would cry and grieve and you know all the dark side of grief. But be like I was saying being able to anchor them in my memory of them and my love for them onto something positive.

 

P: That’s amazing, amazing thing to make your connection stronger every day and something that you enjoy visiting and know right like That’s amazing.

 

T: Yeah, even this interview because like I don’t really have much opportunity to talk about them every now and then in my new business. You know, it’ll sprinkle it in, but it’s not a main, you know, focus. But yeah, it was like I was looking forward to the interview. Because I like to talk about them and I don’t get an opportunity and a lot of people are like, Ooh, you know, like you wouldn’t want to talk about something sad or you know, something so filled with grief. But 

 

P: also the truth of the matter is it’s more complicated than that. Right? There is definitely grief but there’s a whole bunch of other things right. So

 

T: yes, there’s I mean, the grief is it’s part of the foundation. And a lot of time has passed. I remember early on I was on those boards, the pregnancy loss boards, unlike Baby Center even before Facebook, and I remember seeing somebody post Oh, it’s been seven years since my loss and I’m so sad or whatever, whatever and I turned to my husband and I was like seven years oh my god, I don’t want to feel like this in seven years. Why are you still talking about it? Your perception of it is so different. Before and then immediately after, and then like down around like 13 years. It’s a whole other. Yeah, it’s a whole other thing. It’s a part of me. I couldn’t make them live. I couldn’t change reality. So

 

P: well and the whole pregnancy the whole process is so transformative, right? I mean, it’s different than you know, I miscarried at six weeks It comes with different expectation and a different experience and a different so it is a unique experience in that way and I understand what you’re saying I can see why

 

T: Yeah, I look at pictures of myself from before. And it literally feels like I’m looking at a different woman. I was a different person entirely. I mean, I would say especially in like the first seven or eight years, and when I was doing that work that was completely different parts of my old me have returned you know, I’m like naturally kind of a sarcastic cynical a little bit kind of New Yorky and and as I went through the stages of healing and connecting with other women, just kind of seeing how we’re all more the same than we are different even though we’re different than we are the same. Like it really opened me up and really allowed me to learn how to listen and like see people through a deeper lens. It taught me something I never knew before or wanted to know like how to sit with someone in a when they’re in pain. Yeah. Oh, no, no, I am not the person for that. And still now years later, it’s still okay like, hard sometimes but I know how to do that. I know how to show up other people better than I ever would have. I have not experienced any of it. 

 

P: yeah, yeah That makes total sense. We you tell us what’s the name of your business? How do we find it? 

 

T: Well, the business I started back then was called Finding my Muchness. I actually have a book. Like I wrote a book I have been having here because I was cleaning. So that was me a bunch of years ago. You can’t see it on your podcast, but I mean my muchness the website I think has a lot of buggy errors because I haven’t really touched it in many years. It was built on that premise of like the line I used to be much muchier but then I lost my muchness it’s a line from Alice in Wonderland. And I heard that line and I was like I was like there is something I can sink my teeth into the business today. Today. I own I run it with my husband. It’s called ear seeds and we make acupressure products that are worn on your ears for all sorts of health conditions. 

 

I had spent my whole career in the fashion industry in New York City making stuff once I started the muchness project and was doing meaningful work for the first time in my life. I could eventually no longer work in the fashion industry. I started having panic attacks because I was trying to proactively live a life seeking moments of joy. And my job required me to be like, oh China, that’s the wrong shade of pink re do it. Do it like I couldn’t do it. It was just too conflicting. I’m so now actually I couldn’t even this to like this experience. 

 

I had to quit my job in the fashion industry. I did it for 20 years. I couldn’t do it anymore. I learned online business. My husband was an acupuncturist. He was fully supportive of me making that move. And he also has always been committed to kind of finding ways to help in his industry to help the practitioners. And so it’s about two years after our loss when I finally quit my job, and then three minutes later the insurance company that covered like 90% of his patients changed their insurance plan. So both of us found ourselves unemployed staring each other in the face at home with two babies. 

 

And we’re like, What the hell do we do next? And this was eight, almost nine years ago and then we came up with this idea for this business and we started it in New Jersey. It’s been fantastic. Honestly, I mean, to be able to create a business that helps people and then to hear from the people who it’s helping. It’s almost an extension of what I was doing this this idea of learning that for every little bit of good that I put out. It just it’s like reaching out your hand. To help someone originally it was the moms on the message boards, you know somebody saying Help, like I’m drowning? 

 

P: Yeah, 

 

T: I said like on the message boards when I was early in my loss I would want and be like help drowning. And some Mom who had been there before me would like reach your hand across the internet, be like you’re not drowning, you’re fine. Come and pull it up. And then as I started to understand the grieving process and see the patterns that that we all would go through, and someone would come on a message board and say help, I’m drowning and I would reach my hand and say can not drowning. You’re gonna be okay like and pull them forward. Now, even through this new business, which is in total, totally different. It’s just meaningful

 

Tova it so moving to hear about how you translate this exceedingly difficult experience into something beautiful. That’s helping people. Thanks so much for sharing your story. You’re very welcome.

 

Thanks again to Tova for sharing her story.