The Mom Who Didn’t Want to Bring a Child Into the World to Die

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Because no two paths to parenthood look the same, the Cut’s How I Got This Baby invites parents to share their stories. Want to share yours? Email gotbaby@thecut.com and tell us a bit about how you became a parent.

Photo: H. Armstrong Roberts/ClassicStock/Getty Images

After Sarah’s first pregnancy ended in an early miscarriage, she quickly became pregnant again. Her anxiety over miscarrying again lessened with time, until a test result put a pause on that excitement for her and her husband. She discusses not thinking she would have fertility problems (despite knowing women who did), the difficulties of a second-trimester abortion, and how her pregnancy experiences have and haven’t changed her as a mom.

On planning for a family. I’ve never really been a baby person. I really like kids, 5- and 6-year-olds, once you can have conversations with them and they have interior lives. When people bring babies into the office, I’m never the person who needs to touch them. I say, “Cute,” and walk away.

But I knew I wanted to have a family. It was part of the way I envisioned myself as an adult. When my husband and I got married, I was in my early 30s. I’m a planner — I was thinking about how we’d want to get started in the near future, especially if we wanted more than one.

I’m not a very patient person: I went off birth control a few months before we started trying. I knew having a family was the next step in my life, and I wanted it now. I wanted to be in that stage, with a child.

I’m close with women who have struggled to have a baby, but I had no reason to worry. I just assumed I wouldn’t have any problems. I also assumed any fertility issues were related to age — I got my period when I was 16 and my mom went through menopause late. To me, it seemed like the payoff of not having boobs at 14 would be having really great eggs in my 30s.

A first pregnancy. We’d started trying in mid-December. I was pregnant by February. I knew I was pregnant for three days before I started miscarrying. It was very quick, very sudden. I was sure this would be the sorrow I’d deal with on my pregnancy journey. It felt like this was my difficulty. In a weird way, it made me feel better — I felt guilty for getting pregnant so quickly while women close to me were having trouble. It didn’t feel fair.

I was definitely upset, but it was so quick. I hadn’t really had time to register that I was pregnant. I took a test on Friday. By Sunday, it was clear I was miscarrying.

By April, I was pregnant again.

On being pregnant again. Back in the fall, I’d gone to the gynecologist, who told me that if I was going to start trying for a baby, I should take prenatal vitamins and do a genetic screening. I had my blood drawn, but the doctor’s office forgot to label the vial with my name — they weren’t able to send it out for testing. They called to explain what had happened and said I should just come back anytime to do the blood draw. Nothing about it felt urgent; I didn’t go back for a little while and didn’t know the results until I was pregnant, that December. It turns out I’m a carrier for a rare genetic disease called Pompe.

The doctor explained that my husband would need to be tested as well — if they found he was also a carrier, there would be a one-in-four chance of having a baby with Pompe. But again, it didn’t feel urgent. The doctor said he could just have his blood drawn at the eight-week pregnancy confirmation appointment. But because I miscarried, we never went to that appointment. When I got pregnant again, the doctor said he would have the test done when I went to the eight-week appointment for that pregnancy.

None of the testing was on my mind. I was a lot more nervous about miscarrying. But I didn’t. After the eight-week appointment, we told our nearest and dearest I was pregnant. And as the pregnancy went on, I started to get excited. I was thrilled. I felt like we were going to have a baby.

On what changed the  pregnancy. A few weeks later, we had my husband’s test results. He’s also a carrier. That news changed what our pregnancy was.

He spoke with a genetic counselor from the testing company, who explained the 25 percent chance and recommended I have a CVS, which tests the placenta (instead of the amniotic fluid, with an amniocentesis). But because you have to be at least 11 weeks pregnant, I had to wait.

We went from feeling excited to feeling like everything was put on hold. I don’t remember having a conversation about doing anything but terminating, if the CVS results were positive. Pompe is basically a wasting disease. The quality of life is pretty bad — when Pompe presents in infants, you have a baby in horrific pain who rarely lives past 1. At no point did I want to bring a child into the world to die like that. It just felt cruel, to me.

But there was a 75 percent chance everything would be fine. The odds were in my favor.

What’s so cruel about considering a second-trimester abortion is you’ve gotten through the worst part of pregnancy: the nausea, the fatigue. I was feeling better. I started showing. There was a physical manifestation of being pregnant. The week before I got the CVS results, I remember feeling like I was going to be fine. I had a certainty in myself. I’ve lived a fairly privileged life; most things have gone pretty well for me. I thought this would be something else that would work out. I was so excited — I probably told more people than I should have about the pregnancy. I couldn’t really allow my brain to consider the possibility that it wouldn’t work out.

On receiving the results. Before the CVS, we had to meet with a genetic counselor. This sounds awful, but I hated how she talked to us: She kept apologizing instead of explaining the business at hand.

I wasn’t prepared for how much the CVS hurt. They stick a needle — a long one — through your uterus, and then they dig around to find the placenta. Every time the needle moved, I could feel my muscles screaming.

I was in the same room they use for a 20-week anatomy scan. When you’re on the table, you’re positioned to see the sonogram screen — which the doctor uses to know where to position the needle. So the entire procedure, I was looking at a sonogram for someone I didn’t know if I would meet. It looked like a human, with a head and little arms. I had never been in a sonogram room before. I didn’t know I should have looked away.

The same genetic counselor called me the day before I got the actual results. She said, “Great news!” and explained there was no indicator of Down syndrome and that she knew the baby’s sex. But I wasn’t in a risk category for Down syndrome, and I shouldn’t have known the sex — it made the pregnancy all the more real. There was no “good news.” She never should have called me at that point.

I was at my parents’ house when she called me. The genetic counselor started by asking me if I was sitting down. I just remember yelling at her and saying, “So you got bad results! Just tell me!” It was so obvious by her tone, and I wanted her to say it. When I hung up the phone, I burst into tears and hugged my dad for a long, long time.

When I called my OB’s office, I found out the midwife was alerted to the results the same time as I was. She basically called every nearby place that does terminations and got me the soonest available appointment, which was a week later. The next week just sort of happened. I pushed through it. That weekend we went to a fancy omakase place and ate sushi and got wasted, to be honest.

I really didn’t want to talk to anyone about what was going to happen. I sent a text message to my best friend asking her to tell other people. I sent an email to the people I’d told at work. People were very kind; they sent pie, milk and cookies, chocolate. But there was one person whom I wouldn’t have told if we hadn’t worked out together (in gym clothes it was obvious I was pregnant) — the next time I saw her she started crying, which I did not appreciate. I did not want to comfort someone else.

Afterward, I really went through some shit. I think some of it was the hormonal collapse, from that kind of loss. I was so upset and so disappointed, and so shaken in my sense of self. I really thought everything was going to be fine. I had a hard time wrapping my head around it, when everything was not fine.

On moving forward. We wasted absolutely no time. Soon after the procedure, we went on a family vacation; a week after that, we met with a fertility specialist. I was just like, I’ll keep going. I’ll get pregnant again. I didn’t really give myself any time to process what had happened. I threw myself into doing IVF instead.

I had no doubt that IVF would work. Our IVF experience was very different, I think, from people who do IVF for fertility reasons. We already knew I was capable of getting pregnant and carrying a pregnancy. The bigger issue, for us, was getting a healthy embryo.

PGD testing — preimplantation genetic diagnosis, which determines whether an embryo has an inherited disease or not — takes a long time: They essentially build a test based on your specific genetic mutations. It’s not like a CVS, where they’re looking for a gene — they’re searching for unique markers. To track what’s moving with the gene, they need your DNA, DNA from whichever parent passed the gene to you, plus your partner and their parent. It took about four months to build the test for our specific mutations.

For the most part, my experience with IVF was very straightforward. It’s not easy — you’re sticking needles into your stomach, but for me, it was bearable. My doctor was confident that it would work, too, because I was fairly young and had lots of eggs.

While we waited for the test to be built, though, I was fairly miserable. It was hard for me to be around people with kids. This sounds dumb, but Kim Kardashian got pregnant around the same time that I got pregnant. I had a rough time when Saint was born — he was born when I would have been having my baby. It doesn’t make sense to resent her, especially because she’s apparently had a ton of her own pregnancy problems. But I did.

I did two egg retrievals, with the idea of banking four embryos and having two children. After one implantation, the first one took.

On being pregnant a third time. PGD results are only about 90 percent accurate. Having a CVS and being able to tell people made the pregnancy seem a little more real. And it definitely felt a little more real once he started moving. But it didn’t feel completely real until I was seven or eight months pregnant.

At first, I didn’t really want a baby shower. But my husband wanted to have one because we needed a lot of shit — and you really do get a lot, with a baby shower. Plus, by that point, we were ready to celebrate the fact that I’d had a very easy pregnancy.

On an unexpected benefit of the NICU. I was really late: I got to 41 weeks, five days, no sign the baby was coming. One of the risk factors associated with going late is the presence of meconium in the amniotic fluid. He aspirated the meconium and had to spend some time in the NICU right after he was born. There, they discovered that there was a problem with his heart. Instead of the time in the NICU being a bad thing, it ended up being very good — he’s essentially grown out of the problem now. He’s fine, and he’s going to be fine.

On emotional flashbacks. My son is 13 months old now. The termination feels like a million years ago. Every so often, something will remind me and I’ll have an emotional flashback. It comes up a lot when people talk about late-term abortion, especially when lawmakers want to outlaw abortion in the case of genetic abnormalities. It’s hard for me to find the words to communicate that anger. Because no one wants that termination. No one goes into a pregnancy wanting a second-trimester abortion. You don’t want to do that. You’re making a choice that’s for the health of your future family. We made that choice as much for our future children as we did to spare the child I would have had.

It boggles my mind that people wouldn’t get genetic testing done when they’re thinking about getting pregnant — and that not all doctors inform their patients or recommend it. You can save yourself so much heartbreak and time.

Part of me wants to tell everyone: This happened. This is why this matters. But another part of me doesn’t know what other people’s feelings are — and I’m also not someone who tells everyone everything anyway. And if something is truly important to me, like this is, I don’t need other people to tell me what they think about it. This is also not just my story — it’s my husband’s, too.

On motherhood and gratitude. I don’t think I’d be a very different mom, if I hadn’t had a termination and done IVF. I think I’m the kind of mom my personality was always going to lead me to be. All the things that are true about me are true about me as a mother; I don’t think my fundamental personality changed at all.

But I think what’s different is that I feel very lucky. I wouldn’t have called the way I felt before “smug,” but I think it was a kind of smugness, a feeling that getting and being pregnant was easy for me. Now, I think I’m very lucky to have a healthy little boy. I think I’m the same person that I would have been, had that other pregnancy been healthy, but I don’t take for granted that I am.

A Mom Who Didn’t Want to Bring a Child Into the World to Die