Debbie and Mike Goldstein join High Risk Birth Stories to discuss their fertility journey. The couple started trying to get pregnant when Debbie was 33, and eventually began IVF treatment. After multiple miscarriages and failed IVF cycles, Debbie eventually went through multiple treatments including laparoscopic surgery to remove cysts and treat endometriosis, seeing an immune specialist, and more. They also discuss joining a Facebook support group and the many sacrifices they made before eventually having their son.
“Our Fertility Journey” – with Debbie and Mike Goldstein
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Dr. Fox: Welcome to “High Risk Birth Stories,” brought to you by the creators of the “Healthful Woman” podcast. I’m your host, Dr. Nathan Fox. “High Risk Birth Stories” is a podcast designed to give you, the listener, a window into life-changing experiences in pregnancy, fertility, and childbirth. Debbie and Mike, welcome to the podcast. So nice to see you guys. How are you doing?
Debbie: We’re good.
Mike: Everything’s great, doctor. Thank you very much.
Debbie: Everything’s wonderful.
Dr. Fox: We’ve known each other a while. This story’s been a long time coming and I’m really excited for you guys to have the opportunity to tell it. It’s a great story. You guys, spoiler alert, tough beginning, happy at the end. So it’s gonna be very positive but you’ve had a long journey. And we’ve spoken about it many times over the years. And I think that this is really a great opportunity, A, for you to tell your story, and B, for people to hear it. I think there’s a lot to learn. So thanks for coming in person, for, you know, dumping the kids off on your mom so she can watch them. You can come here. After this, you guys should like, you know, taken a movie, go to lunch, maybe take a few days off.
Debbie: Go out to dinner?
Dr. Fox: Yeah.
Debbie: Get away for the weekend.
Mike: Yeah, go to the bar. That would be great.
Dr. Fox: That’s all good. So, let’s do this. Take us back to the beginning. Right? Who are you guys? Where are you in life? Where are you living? What are you doing pre-pregnancies?
Debbie: So I am a teacher.
Mike: And I am a professional. I work for a private equity real estate company. And we lived in Jersey City at the time, typical couple, we met, traveled a lot.
Debbie: We met a little bit later in life.
Debbie: In our early 30s… Oh, we met in our late 20s. We wound up getting married around when we were 32 years old. We were happy. We were living in an apartment in Jersey City, excited to eventually start a family. We were adventurous. We liked to go out, always doing something, always on the go. We took trips, took road trips to Ireland through Greece.
Dr. Fox: What were your thoughts when you got married about kids? Did you talk about it? Was there like a plan that, all right, we’re gonna wait X amount of years? You just sort of let it go naturally and see what happens. What was it at the beginning?
Debbie: The beginning, we knew we wanted to have children, we wanted to have a family. We also knew that we wanted to take some trips first, prior. So that’s why we did go to Ireland and Greece and a few other places as well. But we wanted to wait about a year to start trying.
Mike: Yeah. And for us, we were so focused on the wedding. That happened. It was wonderful. We went on our honeymoon. And we were just kind of hanging…
Debbie: Living life.
Mike: Living life, hanging out, having fun, traveling, going with friends. And like Debbie had mentioned, we always wanted to have a family but we’re like, okay, when we’re ready…
Debbie: It’ll come.
Mike: …it’ll just happen. And it’ll be just a happy ever after sort of thing, and on to the next.
Dr. Fox: How long had you guys known each other or been dating before you got married?
Debbie: Was it three years?
Mike: Three years.
Debbie: About three years.
Dr. Fox: Right. And then you said you waited about a year to start having kids?
Debbie: And then we waited about a year. Yes. We had a typical New Jersey big wedding. Yeah, we were just living the life.
Mike: Yeah, we went to Maui on our honeymoon and…
Debbie: Bora Bora.
Mike: Bora Bora. We were just doing our thing and hanging out with friends and just having fun. And…
Debbie: Getting our careers going.
Mike: Getting our careers going, spending time with friends and family. And it was just something that we just said, “Okay, we’ll have a family at some point.” And most people are getting married a little later. So we’re like, we were just kind of a normal couple.
Dr. Fox: Yeah. I mean, I don’t think anyone would consider early 30s that late to get married nowadays.
Debbie: Right. Now, it’s pretty typical. It’s pretty normal to get married later, a little bit later than in your 20s.
Dr. Fox: So, what happened when you guys started, you know, on your journey, to have a family, to start having kids?
Debbie: We started probably when I was around 33 years old to start trying naturally. About six months went by and I started to buy ovulation kit, six months went by and nothing happened, started to buy ovulation kits and started to track all of that, and kind of the pressure kind of set in a little bit and I realized, “Okay, well, this isn’t really happening.” I thought I would just get pregnant right away and it would be like nothing.
Dr. Fox: Did you think that just because…? Whatever you thought that it was, did you have, like, in your family everyone gets pregnant quickly or your friends were all getting pregnant? I’m just curious.
Debbie: Just friends just getting pregnant and I didn’t really know anything about infertility. I knew it existed but I was never… I guess I never really had anybody close to me that had infertility problems.
Dr. Fox: At least that you know about?
Debbie: That I knew… Exactly. Nobody talks about it. And that’s the thing. That’s one of the reasons we wanna share our story because nobody does talk about it and you think that you’ll just get pregnant right away and continue on life. And that’s not the way it works.
Dr. Fox: Yeah. So, what happens? So six months?
Debbie: So about six months, I started with the ovulation kits and nothing was working. After we started trying, I wound up going to my gynecologist and through bloodwork they found that I had an AMH level, which is how many eggs you have left, of a 42-year-old. So that was when we were like, “Okay, we need to really hone in on what’s happening.” So, they recommended that we go to a reproductive endocrinologist. We went to RMA in New Jersey, which is where we live in New Jersey. And little did we know that was the start of our four years of our infertility journey.
Dr. Nathan: Wow. Four years.
Debbie: Four years.
Dr. Fox: Four years from starting with a infertility doctor to…
Dr. Fox: Okay. Take us through that. What did you go through? I mean, there’s obviously tests and procedures and consultations in this but in terms of how many…? Did they do a lot before IVF or they jumped right to IVF based on the work of…?
Debbie: Well, so they did multiple testings on me. They did testings on Mike as well, through bloodwork and through scans. They always said that I had cysts on my ovaries but never made a big deal about it. So, they were just like, “Oh, you have cysts. It’s not a big deal. Because you have these cysts, we recommend you doing IVF, not IUI because IVF kind of goes around the cysts.”
Dr. Fox: Well, I think the thought is if they do IUI, you may end up with like quintuplets or something like that.
Debbie: Right. Right.
Dr. Fox: Yeah, yeah.
Dr. Fox: Okay.
Debbie: So we did our first IVF that we had… That was actually turned out to be our best IVF, our best egg retrieval, and we had no idea. So we wound up having four blasts. They had recommended…
Dr. Nathan: Four blasts meaning four embryos that look good?
Debbie: Four blasts that went to day five.
Dr. Nathan: Right.
Debbie: So, right.
Dr. Fox: Meaning… I don’t think our listeners are gonna know what a blast is. Yeah.
Debbie: Okay. So…
Dr. Fox: So like a blast, wow, that sounds pretty cool. It’s short for blastocyst. It’s basically an embryo that looks good.
Debbie: Right. Right.
Dr. Fox: Yeah, okay
Debbie: That went to day five. That continued to grow to day five.
Dr. Fox: Where were you getting your information from at the time? Was it all from the fertility doctors? Were you guys big Googlers at the time? Did you have anyone you were talking to or you went through without, you know, getting a lot of background information?
Debbie: We were just…
Mike: Yeah, I think in the beginning of this journey, and I remember just taking a step back when Debbie came back from the gynecologist and they did, I think it was a sonogram, and they saw the ovaries, the person that was actually doing it, when they were looking, her eyes got wide and Debbie realized, oh, man, this is real.
Debbie: There’s something happening.
Mike: …because usually, you don’t see a reaction. And then I wouldn’t say IVF is commonplace but you hear about it and, like, “Okay, we’ll Google it. These guys are popular in New Jersey,” and you kind of go and you go with the flow of it. And in the beginning, you just think, “Okay, I’m in this world and it’s just gonna work.” So in the beginning, I don’t think we really became the experts that we had to become to make our family a reality. So, at least in the beginning, we kind of just went with the flow of things. We figured, oh, there’s cysts on the ovaries, we’re having IVF and then ultimately…
Debbie: We’ll get pregnant.
Mike: We’ll get pregnant, and then in a year from now, it’s no problem.
Dr. Fox: And then there’s no reason that… That’s the numbers. Like, it should happen like that. I mean, that’s what normally happens with a young healthy couple, find some reason for the infertility, even if find no reason whatsoever. You do IVF, it’s likely gonna work. It’s usually gonna work. And they tell you, it’s not 100%, obviously, but there’s no reason not to be optimistic, that it’s gonna work at a time. It’s different, you know, if you’re 52, and you’re doing this, it’s gonna be harder to get eggs and you talk egg donors, but at your age, they generally said… So you do the IVF, you have the blastocyst, you’re probably feeling pretty good that this is gonna work, this is gonna happen…
Debbie: Right. They actually tested us. They did PGS testing.
Dr. Fox: On the embryos?
Debbie: On the embryos.
Dr. Fox: And they were normal?
Debbie: And one out of four was normal. So, we wound up discarding three of them. So, moving forward with that, they transferred the one in and it worked. I wound up getting pregnant at the same exact time we had just bought a house. So we were moving into our house.
Dr. Fox: Right. This is in 2016, right?
Dr. Fox: Okay.
Debbie: So we figured, “Wow, this is great. Okay, so I got pregnant, we moved into our house, things are gonna happen. This is wonderful. We’re gonna start our family.” A week after we move into our house, I found out I miscarried.
Dr. Fox: You mean the blood test started going down?
Debbie: Yes. So the beta started going down and it had failed.
Mike: Yeah. And I remember at that time, I got a call from the doctor and said it didn’t work, and someone who’s… When you first are on this journey and people that are in it know how I feel or how Debbie and I felt, it was like, “Wait, it didn’t work. If she got pregnant, how did it not work?” And that was eye-opening for us and it was pretty devastating because everything was going on in our lives with having a house and all that and…
Dr. Fox: Right, and this is your only embryo from that IVF, ultimately, that was normal? And so you went through this whole process and it looked really good. And, you know, so it’s sort of, like, walk in with a level of despair. And then you get your hopes up and then when you come down, it’s like you’re in a worse place than you started almost?
Dr. Fox: Not almost. True.
Debbie: It’s hard.
Mike: And when you talk about IVF, and anyone that’s gone through it understands this, we talk about it in a one sentence, but when we say IVF, you’re talking about like a three or four-month process that goes through. And anyone who’s been through it can understand what I’m saying. And when it doesn’t work, you’re like, “Wow.” And so that hit us.
Dr. Fox: You’re together, you have this situation where you’re not pregnant, you don’t have any embryos, how did you decide what to do next in that difficult time?
Debbie: I guess we just thought we had no choice. So we just went back to RMA and we talked to a different doctor. They just said, “We don’t know why you miscarried. Let’s try it again.” So we said, “Okay, we don’t really have a choice.” Because trying naturally wasn’t working. Our first IVF failed. So let’s try it again. So we did. And that IVF yielded no good embryos. So we didn’t even have a transfer. So, we kind of put a halt on everything and we said… It was coming to a realization that something, you know, more serious was taking place and it was out of our control. So, in the meantime, I was going to an acupuncturist in Montclair, New Jersey, for women, and she had recommended that I go see an endometriosis specialist. Now let me just backtrack a little bit. The cysts on my ovaries, they started to say at the end of my journey at RMA, that it was endometriosis but they kept saying, “Don’t worry about it. Don’t worry about it.” I in turn relayed that information to my acupuncturist and she said, “You need to take care of your endometriosis because it’s, obviously, you know, most likely the problem with your infertility.” So she recommended that we go see a doctor in New York City, Dr. Iris Orbach, who specializes in endometriosis. She’s a surgeon. So, we went to go see her. And I wound up having laparoscopic surgery to remove the cysts. She excised the cysts. And I also had endometriosis all over my uterus, my rectum. It was all over and I had stage four.
Dr. Fox: Right, but with no symptoms, meaning…
Debbie: No symptoms. The silent…
Dr. Fox: …most people think endometriosis, they think terrible pain every month and this…
Debbie: I never had a bad period. I mean, I had cramps but it wasn’t…
Dr. Fox: Right. It’s so crazy how that is, how it doesn’t always correlate. Some people have horrible pain, and you look inside and there’s like, tiny, tiny specks of endometriosis. And some people have no pain, and you look in and it’s like a total mess. And it’s just hard to imagine or understand why that is. So they found really bad endometriosis?
Debbie: They found really bad, where, and I’ll share this, my ovaries were actually connected behind my rectum.
Dr. Fox: Yeah, to each other.
Debbie: Touching like a magnet.
Dr. Fox: Like kissing?
Debbie: Yep. So, I had that removed. And then I was told that after that surgery, we should try naturally because you’re cleaned out…
Dr. Fox: Because it might work.
Debbie: …and it may work. So, our surgeon had said to try for three months, and if that doesn’t work, then go back and, you know, do IVF. So, we tried naturally, that did not work. In the meantime…
Mike: The one thing I would say just to talk about Dr. Orbach, and also the endometriosis, which is the silent endometriosis, like you mentioned, Doctor, which you don’t know that you have it because you have no outside symptoms. And Debbie obviously suffered from it tremendously. The one thing I would tell people is, for example, Debbie’s brother is eight years older than her because it’s hereditary and people don’t even know their parents had it, but I just want everybody out there to be aware that if there was some type of delay in pregnancy from older people, it could be a sign that you may, and that you had silent endometriosis. And people don’t even know because it’s very difficult to detect.
Dr. Fox: Right. Unless you have pain.
Mike: Unless you have pain.
Dr. Fox: Or surgery.
Mike: Right. If you don’t have the pain, you don’t know, and that could be the cause of your infertility and you don’t even know it.
Dr. Nathan: Wow. Okay.
Dr. Fox: Yeah. All right. So you had surgery. You’re trying naturally?
Debbie: So now we’re trying naturally. We tried for three months and nothing happened. So, we decided to leave RMA and go to doctors in the city. Since we live so close to New York City, we said, hey, you know what? Let’s take advantage of it. We know the best doctors are in New York. Most of the best doctors are in New York City. So, we decided to go to Cornell. So now we’re at Cornell, and along with going to Cornell, I decided to go gluten-free and dairy-free to also bring down any inflammation in my body because, with endometriosis, it brings… You have a lot of inflammation.
Dr. Fox: Yeah. Where did you get that idea for gluten-free and dairy-free? Was that from someone or just from reading around?
Debbie: I actually got it from one of the doctors right before we left RMA. They had said, “You know, maybe you should try going gluten-free, dairy-free. We’ve seen that that helps with some women who have infertility problems.” And I obviously didn’t wanna do that because I know that it’s very difficult to do gluten and dairy-free. But I figured, you know, that I have to start doing more than what I was doing. So, I started gluten-free, dairy-free. We started at Cornell. We did one IVF, no PGS testing. We found out from one of the doctors there that we were seeing that PGS testing sometimes doesn’t work.
Dr. Fox: Yeah, it’s debatable whether it’s helpful in young, healthy people, whether it’s helpful in that you’re “weeding out” the bad embryos or sort of not helpful because they’re actually not gonna be bad embryos if you ended up putting them in. And there’s debate about that. A lot of people… I mean, this is also, I guess, 2016, 2017, and now in 2021, 2022, you know, it’s coming up. Most people are gonna do the testing at that time. That’s what I would say. And it’s not my specialty, obviously, but there’s some debate out there, whether it’s absolutely the right thing to do, or maybe the right thing to do, or maybe not, but it’s unclear whether it was, you know, for you what would happen if you didn’t do it the first time around. I don’t know.
Debbie: Right. I know.
Mike: Yeah, no one will know about the PGS testing. But when we went to Cornell, one thing that we recalled from RMA was that we threw out…
Debbie: We got rid of…
Mike: We disposed of blastocyst, which are day five embryos, and we knew how challenging it was to get them. So, we didn’t know. But the recommendation at Cornell was to not go forward with the PGS testing.
Dr. Fox: So this time, not only are you not pregnant and, you know, trying to figure this out and having surgery, now you also have regrets.
Debbie: And we regretted throwing those three out because we knew how hard it was for us just to make the embryos, in general.
Dr. Nathan: So you said how many embryos were the next round of IVF? So this is your third round of IVF, the first at Cornell?
Debbie: Third at Cornell.
Dr. Fox: And how many embryos did you get with that?
Debbie: With the third at Cornell?
Dr. Fox: Yeah.
Debbie: So we got two that fertilized and we actually transferred… We did a fresh embryo transfer and they transferred day three, instead of day five, knowing that…
Dr. Fox: Both of them or one of them?
Debbie: Both of them.
Dr. Fox: Both of them.
Debbie: And then it failed.
Dr. Fox: Failed meaning?
Debbie: I had a miscarriage.
Dr. Fox: So like before?
Debbie: So I had a beta and then it stopped.
Dr. Fox: Right. So another chemical…
Debbie: Another chemical…
Dr. Fox: …pregnancy? And this is 2017 now, right?
Dr. Fox: So this is now your second? Okay. How much worse was that for you than the first or was it just the same? What it was like if you can describe it?
Debbie: So, it was getting harder and harder. I think I began personally, and Mike too, we begun to shut down emotionally. Socially, we stopped doing things. We were getting, right, sad, depressed. At the same time, a lot of my friends were getting pregnant, which was very difficult and it was just so hard. I’m gonna get emotional.
Dr. Fox: It’s okay.
Debbie: It was just very, very difficult to see.
Mike: It was a helpless time. And Debbie always had never stopped with hope. So I commend her for that. But it was… You do all these sacrificing, right? We’re all taught we sacrifice gluten-free, dairy-free. We had to drive into the city every day. She had this surgery. We changed doctors. We listened to everybody and here we were with literally…
Debbie: Still with nothing.
Mike: …with no answers. And combining that with the personal life of what you’re dealing with where everyone around you is…
Debbie: Getting pregnant.
Mike: Getting pregnant, and you wanna be happy for people but at the same time…
Debbie: And you are happy.
Mike: We are happy, we were tremendously happy for people but we were fighting this war that no one really knew about because at that time, only our parents knew it. And looking back, I kind of regret it because reaching out to people actually helps because a lot of people go through it, you just don’t even know. And at that time, we went to RMA Cornell and at that…
Debbie: I mean, at that point, my body had gone through a lot.
Mike: And we have nothing.
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Did you consider at that time things like support groups or online groups? You know, because obviously, as you said, there are a lot of people who go through this and they don’t always know that others are in a lot of the groups that are out there, there are good ones that either connects people to people or just for information or just that you feel that you’re not alone, and you have, you know, a place to talk about these things. Did you know about those? Did you not know or did you choose not to? Or did you use any of them for help at that time?
Debbie: Not at that time. We kind of just stayed to ourselves. Later, we started reaching out to support groups. But at that time, I kinda… It was just… I don’t know, I was in my own world, I felt like we were in our own worlds. I was closing myself off from people, like we had said. I was saying… My friends were having baby showers. And I wasn’t going, I was just sending a present. I just could not go. My best friend, who I’ve been friends with, since like fourth grade, she got pregnant at that time, and I wound up congratulating her and then kind of just being standoffish, and not purposely but just to keep myself sane because I couldn’t… It was so difficult to take in hearing other people getting pregnant and we were fighting. We were just fighting at that point. And…
Mike: Yeah, so, at that time, yeah, that was a devastating time for us, right after Cornell and…
Debbie: We kind of didn’t know where to turn.
Mike: Yeah, we didn’t know where to turn.
Dr. Fox: Did it affect your relationship with each other?
Debbie: I felt like we got closer.
Dr. Nathan: Like the two of you against, like, the world?
Debbie: The world, yeah.
Dr. Fox: Some couples, it brings them closer together. Some couples, it breaks them apart. I mean, it’s these stressful things and it’s not just fertility. It could be anything, any horrible thing that happens with a family, it’s different couples respond differently. It’s hard to know how that works. But I’m glad at least, you know, you guys stuck it out, obviously.
Debbie: We did. I feel like Mike and I are fighters. We’ve always been like that with our career, with our families, with everything. We’re just fighters. So, I feel like deep down inside, we had that urge. We just wanted to find answers. And I just knew I was still going to be a mom. At some point in my life, we just needed to find that way to get there.
Dr. Fox: It’s an amazing attitude to have, just through that despair to feel like there is hope and there is a light and it’s gonna happen, even though you’re so miserable. And yeah, so where do you turn to next?
Debbie: So, going back to my acupuncturist, who I was still seeing at the time, obviously I was sharing everything that was happening with her and she had recommended that we go see a Dr. Jeffrey Wang at the Sher Institute in New York City. She said a lot of her patients have been there and he’s a very nice guy, a very, very nice down-to-earth doctor, very genuine. So I said, “You know what? Let’s give it a shot. Let’s start going into the city or continue going into the city.” So we wound up going to see him and loved him. In turn, he wound up saving our life.
Mike: Yeah, Dr. Wang saved our life. And it was interesting, and I say that literally because he helped us create our family but when we went to Sher, it was very different than the two other places we went to because anyone who’s been to Cornell and RMA knows that there’s a lot of people there and you’re getting… I can remember Debbie getting blood test, and there’s like 10 women there. And that’s not a good or bad thing. I just thought that that’s what all IVF places were like but Sher was different. It was very personal and it was very one-on-one, which was a pleasure for us because we had a major problem and we needed a solution for it.
Debbie: We needed more than what the other places offered.
Dr. Fox: And so what are they…? Other than the personalized, you know, small… And there are sort of more… The word people use is boutique-y, though that sounds pejorative. It’s not meant to be, you know, IVF centers where it’s a little more personalized and more one-to-one, but they don’t always offer different things other than that. So what did they do that was different from, let’s say, a medical or reproductive standpoint?
Debbie: So they did immune testing. Dr. Wang, he did basic immune testing, and he found out that I had some other issues. So, I wound up… We knew we were gonna go through a fourth egg retrieval. So, he put me on a ton of different vitamins, for example, to improve egg quality prior to my egg retrieval. So, I was on CoQ10. I was on a high dosage of vitamin D, vitamin E, melatonin, of course, the multivitamin, the prenatal vitamin C, prebiotic, probiotic. And I don’t know if I’m saying this correctly, glutathione [inaudible 00:26:03]. So I was on all of those and I wound up… So we did an egg retrieval. We wound up getting 22 eggs.
Mike: Which was the most that we’ve ever gotten combined from the last three.
Debbie: So we were very taken back, like, “Wow, this is amazing. This is gonna work this time. And of course, throughout the IVF process, it’s a roller coaster. Every day you have hope, then you get bad news or or you may be waiting. So you’re on this roller coaster. Constantly your emotions are going up and down and up and down. So here we are, the day of the egg retrieval, got 22 eggs, so happy. And we’re like, “Wow, this is gonna work this time. We have it.” So we let them… So they fertilized and then only two of them, we found out made it to blastocyst.
Dr. Fox: Of the 22 eggs?
Debbie: Out of 22 eggs.
Dr. Fox: Okay.
Mike: And this is in a week period. So, people out there know it’s a roller coster, like Debbie had mentioned but we went from a high to this low, how do 22 only end up to 2?
Dr. Fox: Yeah.
Debbie: So two of them made it to blast. And Dr. Wang had recommended that we go right into another egg retrieval if we wanted to, which we did because based on our past, we wanted to have more than two to fall back on just in case this too doesn’t work.
Dr. Fox: Things seemed to be working for the [inaudible 00:27:31]?
Debbie: Right. Exactly. Because I was on… You know, we thought maybe it was because of all the vitamins that I was on. With immune protocol too, he did put me on prednisone. So I was on all these different things. So we’re like, “Let’s just keep moving forward with the egg retrievals and just try to gather as many as we can.” So we did our next-day retrieval and we wound up… I’m sorry, we did a fourth egg retrieval and then we just went right into the next egg retrieval. Right?
Dr. Fox: Yeah.
Mike: So we basically did at…
Dr. Fox: You did back to back?
Mike: Back to back.
Debbie: Back to back.
Mike: But actually back to back to back.
Debbie: We did three egg retrievals.
Dr. Fox: Wow. Okay. And after the back to back to back, how many seemingly viable good embryos at the blast stage did you have after the three consecutive…?
Debbie: So we had 16…
Dr. Fox: Sixteen embryos.
Debbie: We had 16 embryos. Two of them were blastocyst, day five blastocysts. After we realized that only two of them went to blastocyst, Dr. Wang…
Dr. Fox: He froze them earlier.
Dr. Nathan: Yeah. Okay.
Debbie: Dr. Wang had said, “Let’s freeze them at day three because something’s off and they’re not making it to day five. So we wound up… So we had 2 blastocyst and 14 day 3 embryos to work with.
Dr. Fox: Right. Okay. So you must, again, be on a high at this point…
Dr. Fox: …in terms of optimism and expectations. And what was the first pregnancy like with these embryos? This is 2018 we’re talking now, right?
Debbie: Yep. Yep.
Dr. Fox: Okay. I’m working my way through the timeline. Yeah.
Debbie: January 2018. So, Dr. Wang had recommended that we go on three months of Lupron, based on the fact that I have endometriosis. And Lupron basically brings my uterus down to its original state.
Dr. Fox: Yeah, it sort of makes you, like, temporarily menopausal.
Debbie: Yeah. So it was…
Dr. Fox: That must be unpleasant.
Debbie: It was unpleasant. I was having night sweats, I was feeling headaches.
Dr. Fox: Yeah. As you said, the sacrifices…
Debbie: Not sleeping well.
Dr. Fox: …you put into this. Yeah.
Mike: Correct. It’s a ton of sacrifices.
Dr. Fox: Add it to the list.
Mike: And it was…
Dr. Fox: The menopausal over three months. All right.
Mike: So, at that time, we were riding high. We said all the sacrifice. And Debbie said she was on Lupron, menopause three months. We had 14 day 3 embryos. We had two day five blastocysts, like, all right, let’s go. Let’s put what is considered the two best, the blastocysts and it’s the best time and we sacrificed a ton. So, it’s gonna work.
Dr. Fox: They put both in?
Dr. Fox: Okay. And what happened?
Dr. Fox: Same thing, positive test and a negative test?
Debbie: Did not take at all.
Dr. Fox: Complete failed. Wow.
Debbie: So we had hit rock bottom. We were distraught. I’ll never forget, it was that time when we got the email that they had both failed and…
Dr. Fox: Email?
Debbie: Well, first we got an email, then Dr. Wang had called us, and Mike had come home from work, and I just remember falling to our kitchen floor, crying and hugging each other and we were just at our lowest point.
Dr. Fox: The only reason I’m not blowing off because I know the end of the story. So but it’s just awful. I mean, yeah, it’s…
Debbie: It’s horrible. You feel helpless. You feel you just don’t even know what to do. You don’t even know where to turn anymore. We thought…
Dr. Fox: Had you considered things like gestational carrier or surrogates, egg donors. Had you started to go down that road?
Debbie: Well, that’s what we wanted… That’s where we went. So after that, we wanted to quit. We called Dr. Wang and we said, “We can’t do this anymore.” We wanted to… You know, we started researching adoption or donor eggs. When we told Dr. Wang that, he said, “Listen, I’m not ready to give up on you yet. Let’s try one more time. We have all these day three embryos that are frozen. Let’s not put them aside. Let’s do this. Let’s stay focused and we’re gonna get through this.” So, we said, “You know what? Let’s just…” We kind of just threw our hands up and we said, “Let’s just keep moving forward. We just have to keep moving forward with what… We worked so hard to get these embryos, we don’t wanna waste them.”
Dr. Fox: At this point is it still that it’s really just you guys and your parents who know what’s going on or had you started to let more people into this very sad circle that you’re inhabiting.
Mike: Right. So, at this time, we start and Debbie really was doing it, spending hours. Now we’re like, okay, we gotta get information here.
Dr. Fox: Got it.
Mike: And while social media may get some bad publicity, there are great things about it and there was a chat that all patients from…that Dr. Wang, it’s actually called the…
Debbie: Wang Gang.
Mike: Wang Gang. And…
Debbie: It was on Facebook.
Mike: Yeah, it was a Facebook. Yeah. So Debbie starts going…
Debbie: Dr. Wang actually told me about it because I said to him, I was like, “Can I talk to maybe some of your other patients, maybe some of them have been going through something similar?” And he said, “Well, actually, somebody had started this, the support group on Facebook.” So he told me about it. So I signed up. And honestly, I felt like these girls were my best friends. I used to go on there every single night and talk, ask questions, share my story, learn information, gather information, and I felt like it was home.
Dr. Fox: Were most of the people on that chat people who were in your situation where they have not yet had children or people who have been through it and had successes, and those are the ones you were in touch with?
Dr. Fox: Both.
Debbie: Both. It was people that were reaching out for help like Mike and I, and then other people who were on there to help people to share their stories.
Dr. Fox: No, listen, as you said, there are good things about social media. It’s not all poison. I mean, you could connect with people, thousands of people from all over the world. In a million years, you’d never be able to meet all these people or have any interaction with them. And you can do it in an instance, which can be terrible but could also be awesome for something like this. It’s awesome. I mean, this is what you need. You need to find lots of people who can give you hope and you can bounce questions off of and know that just knowing you’re not alone, that this is so prevalent, that there’s so many people who are going through similar pores, I don’t know if comfort is the right word, but at least it’s validating that you’re not like the one freak on the planet, you know, who’s going through this, that this is something that happens and people struggle with this.
Debbie: Well, I think at that point, too, I realized exactly what you just said, I realized that I wasn’t alone and there are so many people that go through this and don’t talk about it, don’t share their story. And I took comfort in that, finding those people that were similar to me, I felt like those people had automatically become my friends and I felt secure talking to them about it because at the end of the day, nobody truly understands unless they’ve gone through something like this. I mean, aside from the Facebook group, we started opening up to a few family members, my sister-in-law, I started opening up to my sister-in-law about our problems who she was a tremendous help. She helped me all the time. I also opened up to one of my best friends, who was always there for me. When we had told a few other people as well, but it was really the girls on this Facebook support group that I really felt like understood what I was going through because they have gone through the same thing.
Dr. Fox: What about you, Mike? Who did you reach out to…? I mean, you were on the same group, did you find it that you didn’t need the same thing or you just didn’t wanna be a part of that or there weren’t as many men on it? What was your experience with this?
Mike: Right, from a man’s perspective, it’s certainly different from a woman’s perspective. And for me, I was more supportive of Debbie and how she wanted to go about it and I really followed her lead. So, just coming home at night, listening to the information that she gathered and that’s where we started hearing the same name come up over and over again. And we got, maybe we should reach out to this person because a lot of women were going to this doctor and having success. And then the successful women were coming back onto these chats and communicating this. And it wasn’t some when you Google it, you don’t find him and we’re like, “Okay, well, let’s see what he has to say” because apparently, he had some success.
Debbie: And that person was Dr. Braverman who was an immunologist. Like Mike had said, the girls on this chat started talking…the support group started talking about this doctor. And so we said, you know what, let’s give him a try. So we kind of halted everything at Sher. We knew we had the 14 embryos frozen and we halted everything because we said, you know what, I just got off of three months of Lupron. We had two blast put in, transferred and that failed. So we need something a little bit more. So we made an appointment with Dr. Braverman, he wound up taking, was it 22 vials of blood from…
Dr. Fox: All of your blood?
Mike: All of your blood.
Debbie: All of my blood out of my body.
Dr. Fox: Yeah. He took out an organ from you.
Dr. Fox: I’m gonna take your spleen, I’ll give it back. All right.
Debbie: So he wound up taking 22 vials of blood. He took a lot of vials from Mike as well. I think it was 12 vials from Mike, and put together this report that basically showed different markers and different immune markers that were wrong with me. So along with endometriosis, he found these are just some of the things, he found that have high natural killer cells. He found that we have HLA mismatching. We have MTHFR factor. I had an HY restriction, which basically is a mutation that attacks male embryos. So, for example, if I was to get pregnant with a male, my body would automatically attack that embryo. Right? So we had all these things working against us that we had no idea. And at first, you know, we got the report back and we sat down with him and we said, “Well, I don’t know about all this.” It was so overwhelming. And it was scary because this is like… The immunology world is like a whole other world that we didn’t even know existed. But we said, you know what? We just threw our hands up. We’ve been through so much already. Let’s just give this doctor a try.
Dr. Fox: Yeah, I mean, it’s tough. The whole world it’s…I don’t wanna say it’s unexplored but it’s one of these situations where it’s unproven in a sense. I mean, there aren’t great studies that demonstrate that the test you had and the treatments you ultimately end up having are helpful or not. And so we’re sort of left, everyone sort of throws their hands up and people do it, and some have great success. Some people do it and don’t have success, and some people don’t do it, and have success or not have success. But I mean, ultimately, what do you care, right? I mean, you’re just looking for something. I mean, you were going through so much and so when we talk about it, like on an academic standpoint and people, you know, this and they argue about the studies and this and that, and on that level, fine. But, you know, on a personal level, it’s just a totally different realm and it’s a different discussion that happens. And you’re trying to do anything. You’ve tried all the other traditional, so to speak, treatments or options. And so, you’re with him, you’re doing all this, he comes out, he develops this very personalized immunologic plan with treatments and medications and all these things and how did that work out first time around?
Mike: It’s very rare that you sit with somebody for an hour in your life and he changes your life, which is exactly what he did. And it’s very scientific and it’s challenging for someone that’s not in the medical field to understand, but looking back at it, it helped us create our family because he identified the issues and it worked and he realized what we needed to do in his mind for us to have a child. So, Debbie embarked on a whole laundry list of different medications and she can go into it.
Debbie: So some of the medications that I was on prior to my next transfer, prednisone. I was on Neupogen, which is a shot that increases your white blood cell count and it does something with your immune system so that your body does not attack your embryos. I was on one shot of Lovenox per day, which is to promote blood flow. I also did intra lipids infusion, which I did every three weeks for throughout the first trimester. And that helps to lower natural killer cell activities and lowers inflammation. I did an HCG wash prior to my transfer and that’s for endometrial receptivity issues. I was on letrozole before my transfer. I was also on one baby aspirin per day. And actually, I was on that throughout my whole pregnancy, along with the Lovenox mentax. Am I saying it right?
Dr. Fox: Mentax.
Debbie: Yeah, I was on… It has Methylfolate in it, which helps to reduce the MTHFR factor. I was on 1,500 milligrams of metformin to help promote cell life, I was on Claritin, high dosage of Omega-3s, which we found out that EPA and DHA is in Omega-3 is good for inflammation, which is what I have due to the endometriosis. And then, of course, I was on estrogen and progesterone, my prenatal and a high dosage of calcium.
Dr. Fox: You’re giving me a flashback because I had to type all these medications. You told me the first time we met.
Debbie: I remember bringing you a list. I just wrote it out because you can’t remember everything.
Dr. Fox: Yeah. So I mean, you were on a ton of stuff?
Debbie: So much.
Dr. Fox: And we’re throwing the kitchen sink…
Dr. Fox: …at you, obviously. How did it work out that first time around?
Debbie: So we had all of those embryos, day three embryos. We wound up choosing the best four. We transferred four of them. And one of them resulted in our son.
Dr. Fox: When it’s clear that you’re pregnant, right? You see an embryo, there’s a heartbeat. You haven’t miscarried. Give us a sense of how much of your emotions are joy versus terror, that something’s gonna happen. How would you divide that up? Because it’s gonna be both, right? There’s no one is pure joy and it’s not gonna be pure terror because… Is it 50/50? Is it 10% joy and 90% terror, or the opposite? What would you say it was?
Debbie: I would say it’s about 50/50.
Mike: Yeah, for me, it was almost 90/10.
Dr. Fox: 90/10, what?
Mike: Of fear.
Dr. Fox: Yeah. Okay.
Mike: Because I saw Debbie go through so much pain, and to stand as a husband next to your wife and see her go through the pain and not help her, you’re fearful. And I remember just being so, like, let’s not tell anybody. Let’s not tell anybody. And it was a good give and take because for us every day was a good day that she was pregnant.
Debbie: Every day that I woke up and I was still pregnant was a good day.
Dr. Fox: It’s amazing. Yeah.
Debbie: And that was the attitude I had throughout my entire pregnancy until our son was born, every day. And I’ll never forget the first time that we had a beta, which is the hormone that tells you that you’re pregnant, we were in shock. But we were like, “Okay, let’s just see what happens because we’ve been through this.” I’ve had betas before. I’ve had betas before and they failed. So, moving forward, the first time we heard the heartbeat, I’ll never forget, we were at the Sher Institute with Dr. Wang in the room and one of the nurses, and that sound was just the best sound we’ve ever had.
Mike: Yeah, that heartbeat was the best sound that I’ve ever heard in my life and continuing and…
Debbie: So they did the ultrasound and you hear the heart… I’ll never forget. He turned up the volume and on that computer screen, you see the heartbeat going up and down, boom, boom, boom, boom, boom, boom. Everybody started crying, including Dr. Wang had a tear coming down. And the nurse had tears in her eyes, Mike. We were all crying just from pure joy. And I just wanna make a comment too, Dr. Wang was actually leaving the Sher Institute. And the day we heard my son’s heartbeat was his second to last day at the Sher Institute. So, it was even more special, aside from getting pregnant, the fact that I did get pregnant and Dr. Wang was there, since he was honestly our guiding light through since we met him. He was phenomenal, and I’m so happy that we were able to share that moment with him.
Dr. Fox: Wow. What an amazing story and It’s just the beginning of the next story. But it is the culmination of such a journey to get there and what you’re describing, how difficult it is, and you know, how it affected your daily lives, and your interpersonal relationships, and your mental health, and that it’s so common. And I think we’re better now as a society in talking about, and to being open about it, but many people are not. And I think that your story is such a great reminder of how this happens, and how much despair people have, and how important it is to try to talk about it, to try to be open about it, to try to seek help, whether that’s medical help, whether it’s emotional help, it’s everyone’s different. So thank you. And we are absolutely gonna also come back and do this again to talk about your pregnancies because that’s gonna be next.
Debbie: Perfect. Thank you.
Dr. Fox: Thank you for listening to “High Risk Births Stories,” brought to you by the creators of the “Healthful Woman” podcast. If you’re interested in telling your birth story on our podcast, please go to our partner website at www.healthfulwoman.com, and click the link for sharing your story. You can also email us directly at firstname.lastname@example.org. If you liked today’s podcast, please be sure to check out our “Healthful Woman” podcast as well, where I speak with the leaders in the field to help you learn more about women’s health, pregnancy and wellness. Have a great day. The information discussed in “High Risk Birth Stories” is intended for information and entertainment only and does not replace medical care from your physician. The stories and experiences discussed in our podcasts are unique to each guest and are not intended to be representative of any standard of care or expected outcomes. As always, we encourage you to speak with your own doctor about specific diagnoses and treatment options for an effective treatment plan. Guests on “High Risk Birth Stories” have given their permission for us to share their personal health information. Paid sponsors of the podcast are not involved in the creation of the podcast or any of the content. Support for our sponsors should not be interpreted as medical advice from the podcast, the host, or the guest.