Why She Chose to Celebrate Her Pregnancy With a 50% Chance of Survival

And we continue with our American Stories. Up next, you’ll hear a story from Lex Ginger, a woman who has a remarkable journey and is quite possibly the only person to be sworn in as an attorney in the maternity ward of a hospital.

Here’s Lex.

I’d always known that I could potentially have fertility issues. So I have something called polycystic ovary syndrome, where you have like little cysts all over your ovaries, and it can make getting pregnant kind of difficult. So I’d always been told that when I was starting at eighteen. Since then, I’ve even discovered I have a blood clotting disorder called Factor Five, which makes miscarriages very likely. It makes maintaining a pregnancy very difficult; higher chance of stillbirth, etc. Very dangerous. I had told my husband early on while we were dating that I wasn’t sure if I could get pregnant and everything, and he said that didn’t bother him whatsoever. We were in love, etc. We then got married six months later, so we celebrated our one-year anniversary like a month before we got married. I think people, probably from undergrad, thought I lost my mind for a second. But once you meet Patrick, it all makes sense. He’s literally such an amazing person, and it was just ‘when you know, you know’ type of thing. And then in October 2018, we decided that we would try this one month in October, and if it didn’t happen, we were going to hold off until summer 2019 because I had to take the Bar, which is a test that attorneys have to take to practice in their state and become licensed. So we tried for it, and then two weeks, three weeks later, I thought, ‘Well, this is probably not going to be super accurate because of the PCOS, but hey, might as well.’ I peed on the stick and I put it down in my bathroom, and then I went about my day. I didn’t even look at it. I ran errands around town. I didn’t even think I was even—it wasn’t even a thought in my mind—I could even possibly or potentially be pregnant. So I literally didn’t look at… I didn’t look at the stick. And then in the afternoon, it just like occurred to me. I’m like, ‘Oh, yeah, I did that. I probably should look at it, you know, just to see.’ And it said pregnant, and I was just over the moon. First thing I did is, I called my doctor, and they said, ‘Okay, we want you to come in today, Friday, and do a bloodwork test, and then come back in Monday, and I believe Wednesday, and then we’re going to see the levels of your bloodwork.’ Pregnant women have something called hCG. It’s the pregnancy hormone, and you should see a double every forty-eight hours. They told me, because, you know, it was so early on, they felt like it might be a chemical pregnancy, and they didn’t want me to get my hopes up. So I went and did the test, and it was 200, and then I went back again, and it more than doubled. It was 800. And I remembered like the third time it was like one thy four hundred, and I remember asking the woman on the phone, I’m like, ‘Is this okay? Is this… is this normal? I’m like a little nervous.’ And she said, ‘Oh, no, this is… this is great. This is like a really healthy pregnancy. It’s not a chemical pregnancy whatsoever. So we’re going to set you in for your first, you know, ultrasound appointment at six weeks.’ And then we went to it, and on the screen we saw one yolk sac, and we saw, you know, what appeared to be just one baby on the screen, as we thought and expected. And I remember the doctor saying, ‘Wow, this is just the strongest fetal heartbeat! I almost want to ask the other doctors to come in and hear it because it’s so amazing how strong it is.’ So we look at the screen. Everything’s looking healthy, everything’s looking great, strong heartbeat. We’re excited. I’d been feeling really great at this point. I thought, ‘Oh, I got it of not getting morning sickness.’ It runs in my family. I woke up, but I remember it was dead on the money. Seven weeks. I could hardly open my eyes; like they felt like they were shut. For a couple of days, I wasn’t able to even keep down water. So I called my doctor’s office, and they told me, ‘Hey, we can give you a prescription for the medication, but we really want to see you, at least to pick up the prescription, maybe just, you know, have a look over you.’ But it should be no big deal. ‘We have an appointment in an hour.’ I told my husband, Pat, ‘You know, I have this nausea check. The doctor’s office is across the street from her house.’ I said, ‘Please!’ He’s an attorney. He had court every morning. I said, ‘Please, do not come to this appointment. I don’t want you missing work for it. It’s just a prescription pickup.’ So I go to the doctor’s office with big sunglasses on, in a solo cup full of ginger ale, and the doctor saw me, and they’re like, ‘You know what? You look… you look really bad. Let me just give you a quick ultrasound and make sure that everything’s okay with the baby, because I know you’ve been throwing up so much, and you looked dehydrated. You might need an IV, etc.’ And she starts shaking ultrasound, and I feel like at the time it just was taking a really long time, and she just seemed like she was concentrating so hard on the screen, and I started kind of getting a little nervous. And the doctor, after minutes, minutes, minutes, looks at me and says, ‘Do you know you’re having twins?’ Like in shock? And I look at her and I just say, ‘Oh, no, I’m not.’ And she says, ‘Yes, you are!’ And I said, ‘No, I’m not!’ And she said, ‘Yes, you are!’ And I said, ‘There is no way! I was just here last week, and there was one, and they don’t… they don’t multiply like that! What are you talking about?’ And she’s still like looking and looking and looking and looking at the screen, and she looks just so concerned. And the way she was talking to me was just not in like a happy, positive, like, ‘Oh my gosh, you’re having twins!’ It was like, ‘You’re having twins!’ like. And I said, ‘Are they conjoined?’ And she looks at me and says, ‘They might be.’ Let me explain: Twins normally each have their own yolk sac, and there’s just one here, but there’s clearly two heartbeats, so they’re either conjoined or there’s something called monoamniotic monochorionic twins that are not conjoined. You know. I alwaysly start asking her questions because I’m thinking, ‘Okay, there’s a chance that they’re not conjoined mono-mono.’ That doesn’t seem so bad, like, I don’t even know what that really means. And she tells me, ‘Well, monoamniotic monochorionic means that your twins have one placenta and they’re in this same sac together.’ And I looked at her, and I’m like, ‘Okay,’ you know, still not really understanding. I said, ‘Okay, well, how many times do you see this a year? You know, what’s… what’s the prognosis, so to speak?’ And she looks at me and she says, ‘I’ve never seen this in my entire career.’ And then she kind of walked away to this cabinet and pulls out a medical textbook, flicks it open. I joke and say, ‘I feel like she blew dust off of it.’ That’s what it felt like. But she flips to the page and says, ‘You know, there’s three sentences on monoamniotic monochorionic twins. You are one in ten thousand to one in sixty thousand pregnancies a year in the United States. They have a fifty percent chance of surviving the first trimester. If your pregnancy makes it past twelve weeks, in the second trimester, you have about a thirty percent chance of miscarriage, whereas the average chance of miscarriage is about one to five percent. So it’s very dangerous, and really the likelihood that you’re going to make it past twelve weeks is pretty slim.’ Meanwhile, my husband’s not there. This is a lot of information to take, and I start crying, and I’m just bawling my eyes out. I had left my phone in the car, and, you know, my haze of feeling so sick, and I was just practically going to have a panic attack, to be honest with you. And the doctor just starts explaining that they’re so dangerous because twins are usually in separate. That’s what really keeps them safe. It keeps them from compressing; it keeps their umbilical cords from tangling; it keeps them from doing all kinds of things, like twins aren’t actually supposed to touch skin-to-skin in the womb. They’re not supposed to be able to hold hands or hug or anything, because all of those things are just so dangerous. Just telling me all this information, I’m just like, ‘Mind blown!’ It’s a lot for me to take. And I remember my doctor, who’s a very stoic woman, says, ‘Can I give you a hug?’ And I was like, ‘Oh, no,’ mentally, because I’m like, ‘She’s not a hugger type, and if she’s hugging me, this isn’t good.’ So she starts hugging me. I’m crying, and she tells me that I need to see something called a maternal fetal medicine specialist, but they won’t see anyone until fourteen weeks, and that they’re not going to be able to know whether they’re conjoined or mono-mono really until then. My doctor said that her office was going to start doing weekly demise checks every single week until fourteen weeks to see if the twins were still alive or not. Up until I was at fourteen weeks, I felt floored.

And you’ve been listening to Lex Ginger’s story of her pregnancy, and it’s one of the greatest moments in a couple’s life when they find out that there’s a baby, and it’s also one of the most worrisome moments.

Of a life. Will the baby be healthy? Will the baby survive?

We’ve done a lot of segments on miscarriage here on this show because it’s real, and the grief is profound. And Ronald Reagan signed into law the Infant Loss Bill in 1984, and he called it one of his most important, just to give recognition to what happens to women and their husbands when a baby is lost in the womb.

When we come back, more.

Of the story, of Lex Ginger’s story, what happens next here on Our American Stories. And we continue with Lex Ginger’s story, and we’re about to hear what happens next after hearing—well, it’s just the worst possible news a woman could hear, and worse, her husband, who wanted to be there, he wasn’t there, and she didn’t even have a phone nearby.

Let’s pick up where we last left off.

I get my phone that I left in my car, and I call my husband, bawling my eyes out. He’s probably confused, and he immediately takes off from work, meets me at the house. I’m just curled up in bed crying, and he’s, you know, holding me and just telling me everything’s going to be right. And it was just a lot to take, because the thing about mono-mono twins, too, is that if they were to demise—which is the medical term for, you know, twin death—it’s any moment, because the tangling, the compressing… it can be. It’s a minute by minute. It’s not something that you can predict, and it’s not something you’re going to feel. And it was just a feeling of overwhelming sadness, and I just felt like there’s no way I’m going to even make it past twelve weeks. How sad is this? And I’m just crying, and Pat was like, ‘You know, she says it’s fifty percent.’ Like, ‘You’re thinking fifty percent negative, but there’s fifty percent in cases that can make it, and like, ‘Why not us?’ I ended up making it to fourteen weeks. At this point, we had already received the results for the gender of the twins. Another interesting thing about mono-mono twins is that seventy-five percent of the pregnancies are girls, and mono-mono twins are always identical. They don’t know why mono-mono twins are overwhelmingly girls, but the theory is that the female fetuses are stronger and can withstand the tangling and the compressing better than boy fetuses, so to speak. But I was just… I was so sad, and I was like, ‘It’ll just make it tougher if I know the gender and I miscarry, and I’m just going to be so sad.’ And at this point, I remember my sadness was so bad that my husband would leave for work, and I would be in bed, and he’d get back home, and I would be in the same spot. I hadn’t moved, and it also doesn’t help if you’re so morning sick. Meanwhile, all of this going on, I’m studying for the Bar to become a licensed attorney, which is one of the most stressful times in a young attorney’s life, just in general. So my husband was like, ‘You really need to start seeing a therapist, that potentially like a trauma therapist, that can walk you through this and help you reframe things.’ And so that’s what I did. Really put me in a better mind frame. I started to delve into the Bar study because I felt like it was a good distraction, and it helped me get to those, like, appointments to appointments. I almost felt like I lived for those weekly appointment checks, and it actually helped sitting for the Bar. I don’t know how many people say, like, ‘sitting for a Bar is a treat,’ but for me, it was a great distraction. So we made it to fourteen weeks, which was going to be the MFM appointment. So since we made it to fourteen weeks, we decided, ‘Like, let’s do the gender!’ Like, ‘We made it this far!’ And I remember knowing, I’m like, ‘They’re going to be girls, because they’re always girls!’ And we did just a little dinner with family, and we did the ‘one, two, three,’ cut open that cupcake, and dang it, if that icing wasn’t blue! We were over the moon. We were excited because honestly, we didn’t care if they’re boys or girls. We just wanted healthy babies. And I remember when we got home, my husband was like, ‘Okay, well, we only have two boy names ever on our list.’ Before we ever even had kids, we just had tons of girl names, and then we just had two boy names: Maxwell and Miles. And he goes, ‘Well, that makes it easy.’ We got Maxwell Miles. And I looked at him like, ‘Oh, we can’t name them, like, that’s bad luck. Like, what if they don’t make it? And I can’t. I don’t know if I can handle, like, them having names.’ My husband looks at me. He’s like, ‘Max and Miles are going to make it!’ He’s so positive all the time, and it was extremely helpful because I think if you have two people that believe the world is ending, it would be a very tough marriage. But it’s a good balance. And he wanted us to have a baby shower, and I said, ‘Oh no, I know, we can’t have a baby shower! We’re going to jinx things. What if we, like, lose them right before, and we’re going to have to call everyone?’ And I remember I talked to my therapist, and I remember telling her, I said, ‘What if they don’t make it?’ And she goes, ‘And what if they don’t?’ And I go, ‘Well, then I’m going to have to call everyone and tell them that they didn’t make it.’ And she goes, ‘Well, can you assign someone to do that for you so you don’t have to do that emotional baggage?’ And I said, ‘Well, of course I can’t!’ And she goes, ‘Okay, well then, why else don’t you want a baby shower?’ And I remember saying, I’m like, ‘I don’t know, it will kind of be embarrassing if maybe we have the baby shower and then I lose them the next day.’ And she goes, ‘Is that really going to be, you know, embarrassing?’ And I said, ‘Well, it’s not going to be embarrassing; it’s just going to be very sad.’ And she told me, she’s like, ‘Well, is it going to be more or less sad just because you had a party for them?’ And I said, ‘Well, no, not for me.’ It’ll be sad either way. Well, we devastating either way. And she says, ‘Okay, well then, you take that what you will.’ We go to my maternal fetal medicine specialist, and she kind of gives me the news. I’d already looked up some things on Google, which—but I do not recommend if you have a high-risk pregnancy. But my MFM told me the boys are monoamniotic monochorionic twins. They have separate blood flows, and they are not conjoined, but they’re definitely monoamniotic monochorionic. This is a very potentially dangerous pregnancy for the twins. And my MFM kind of gave me the bomb that I knew was coming, which was that, somewhere between twenty-four and twenty-six weeks, you’ll have to be admitted into the hospital, and you’ll have to be monitored on a schedule. It’s going to be grueling, and you’re going to have to have a planned C-section between thirty-two and thirty-four weeks. And she said, ‘Our hospital that our group is associated with, we don’t have twenty-four-hour OB-GYNs on staff.’ And she said, ‘You’re going to have to go to a research hospital. You’re also going to want to be at the research hospital because they have a Level IV NICU. So if your twins make it, you want to have the best NICU care possible, and our team cannot provide for you.’ That’s a lot of information to take. Obviously, it kind of made it more scary to hear that, like the big labor hospital in town can’t take you because you’re too high-risk. So at fourteen weeks, I get moved over to a completely new group, and I find some just wonderful doctors. But I remember my very first appointment with an OB-GYN was at eighteen weeks, and I remember I went to this eighteen-week appointment, and this doctor is flipping through my file, and she kind of, I remember, just kind of says it not in a kind way—very blunt—said, ‘You know, one of your twins has a marker for Down syndrome.’ And I was like, ‘No, I’ve never been told that!’ And she goes, ‘Yep, they have a little spot in their brain,’ and kind of just keeps flipping through the file and doesn’t pause to, like, let me process information. I said, ‘Okay,’ and then she keeps flipping. She goes, ‘Oh, by the way, we notice here that one of the twins has one hole in his heart, and the other one has two holes in the heart, so you’re going to have to start seeing a fetal cardiologist.’ And then just kind of keeps moving on. She didn’t have the best bedside manners. When I’m trying to say: she was kept dropping bombs and just would keep moving on. The conversation had a lot going on. Obviously, it was a lot of really tough medical information to take, but I kept just trying to stay on the path of positivity. At the time, I still was studying for the Bar, and I remember when I was five months pregnant, it was time for me to go take the Bar. This was maybe a week bef—