The Canadian Woman Shocked by Reproductive Care in the U.S.

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A few years ago, Victoria and her husband moved to the U.S. from Canada to pursue their careers in academia. Both excited to become parents, they waited until becoming settled — with a house and in their careers — to start trying. After just a few months, Victoria became pregnant. She discusses the pregnancy symptoms that seem unusual in retrospect, what she and her husband decided after a T21 prenatal diagnosis, and what surprised her about reproductive health care in the U.S.

On early pregnancy. After I took the test, we both immediately googled the odds of a false positive. Being that we’re both scientists, we wanted to know if this was real. Three or four days later, a doctor confirmed the pregnancy.

Somewhere around eight weeks, I started feeling uncomfortable. I just chalked it up to a completely new experience for my body. If I had a busy or active week, I’d start spotting, which wasn’t necessarily alarming, though it was bright red and not old blood. My doctor knew about it, and he never seemed overly concerned. But I know now that the amount of spotting I had was not necessarily normal.

My husband and I had decided to do NIPT testing, the cell-free DNA prenatal screen. My insurance didn’t cover it, but we wanted it done anyway. We didn’t want to find out the sex — we wanted to have a full idea of any genetic issues. We wanted to go in eyes wide-open. I went into the screening not thinking anything. I even remember saying that I really liked the ultrasounds, because they were a window into what was growing inside me. I wasn’t showing at all, so it was nice to know there was something there.

On receiving surprising test results. I was back at work when I got a call from someone not affiliated with my doctor’s office; it was a genetics office. She said they had the results from the NIPT screening. She did not ask me if it was a good time, if I was sitting down, whether I had any support. I was just sitting in my office. Luckily, it was a pretty quiet day at work.

She said, “The test came back 93 percent positive for T21, which is Down syndrome. Do you have any questions for me?”

I just sat there, flabbergasted. When we’d talked about the DNA screening previously, my husband and I had said there were certain things we would terminate a pregnancy for: T21, T18, and T13. Especially with Down syndrome, it’s a very gray diagnosis. We had decided that we probably did not want to expose a child to an indefinite life.

The genetic counselor asked again whether I had any questions. I told her that I was sure I was going to have many questions, once I had a chance to think. She said, “Well, what does this mean for your pregnancy, and what are you going to do?” I told her that I didn’t know for sure, but that termination was an option for us. She said okay, that she’d talk to the doctor and see what they could do. It never occurred to me, as a Canadian, that I’d have any issues pursuing a termination. I just figured that if I needed one, my health-care provider in town would do the termination, and that would be that.

On looking for answers. That afternoon, I went to my previously scheduled appointment and had the ultrasound. We asked the ultrasound tech whether the nasal bone was present, what the nuchal measurements were, wanting to figure out the markers of T21. The tech couldn’t communicate with us, but she did tell us the measurements and told us we could speak with the doctor.

Talking to him, I just broke down. He confirmed everything we’d learned, but said that he wanted us to find a more definitive answer than this screening — which, unfortunately, he did not have the resources to do. The best option was to refer me to a specialist 90 minutes away, who could do an amniocentesis (it was too late to do a CVS).

When we left that day, the doctor had us exit the backdoor. He didn’t want me to upset the other pregnant women in the waiting room. I get it, but it also didn’t really feel great — having to be concealed through a back entrance.

On administrative problems. That was the point where I found out you really have to advocate for yourself in this kind of situation. Two days later, I did exactly what my doctor had instructed me to do: I called the specialist’s office. But they’d never heard of me — they’d received no paperwork, no referral, nothing. The next day, I called my doctor’s office, called the clinic, called my doctor’s office, called the clinic … all within two days of the diagnosis.

A few days after that, I started bleeding a lot — I left a big clot in the shower. I just thought, Oh no, I might be miscarrying now. I called the doctor; he booked me for an appointment that afternoon. Everything looked fine, he told us, and then said that he assumed the bleeding was because I’d had my amnio. And I explained to him that no, I didn’t even have an appointment yet because the front desk hadn’t sent along the proper paperwork. Things moved a lot smoother after that.

On discussing options. This first specialist appointment was just with a genetic counselor, where we discussed what the diagnosis could mean. We had a long talk about what children and adults with Down syndrome are like, and how having a child with Down syndrome could affect us. This was not a conversation that was forced on us. We did want to explore all options.

She explained what life with be like with a baby with Down syndrome, specifically one who would need a lot of surgeries, and offered to connect us with other families and groups for people with Down syndrome. She explained the needs of someone with Down syndrome, and what our options would look like once this baby became an adult. Most likely, one of us would have had to stop working. Our child-care options would certainly have been limited, and all of our family members are a plane ride away. And who would the care fall to once we were gone? We looked at all aspects of what this life would have been like, including what it might be like for any other children we might have. We came to the conclusion that this was not something that we could handle.

I feel like sometimes the cases of Down syndrome you hear about are the rosier cases, the ones where they’re very high-functioning. But the spectrum is very wide, and it’s very hard to know what it could be like. For us, there was too much unknown.

Termination was also discussed, and we learned that there were two different options — labor and delivery, or dilation and evacuation. But we needed a definitive diagnosis before we went the termination route.

This meant we had to book another appointment to have an amnio. The first one given to us was about four weeks later. But I vocalized — and so did my husband — that I didn’t know if I could take that. By that point, it would have been five weeks of being pregnant without really knowing if it was going to continue. She understood, and was able to bump up the appointment by three weeks.

On making a final decision. At our next appointment, we first spoke to the genetic counselor again, then we were brought into the ultrasound room. The ultrasound room lasted about 45, 50 minutes. I requested that they turn the screen away from me. My husband watched the whole time, and later, he told me that the baby didn’t move the entire time, not once during all the poking and prodding.

Afterward, they brought us out of the room and told us that the doctor and the genetic counselor would come talk to us. The doctor explained that they now recommended not doing an amnio. They’d seen an echogenic bowel, which is a marker for Down syndrome, but the most — I think she used the words “alarming” and “shocking” — thing was the heart, which was so malformed that whether or not this baby had Down syndrome, it would not live a happy life, if it even survived. As bad as it sounds, it helped in my decision. I was no longer terminating for a Down syndrome diagnosis only.

From there, we booked a termination, for the following week, in an even farther away city. I decided to have a D&E because I didn’t want to have a traumatic labor and delivery experience. I was hoping that someday I could enjoy labor and delivery — well, as much as you can — with a living child.

On insurance issues. We did make it, and we didn’t miscarry. We got to hotel the day before the termination would start, my husband’s birthday. A rough birthday I would say. I called the clinic to ask about taking Advil ahead of time, which I’d heard was recommended. A woman in finance wanted to talk to me and explained that she was having trouble getting in touch with our insurance — and that she wasn’t sure if they could go through with the procedure because it looked like the doctor was not in-network.

For the next few hours, I was on the phone, back and forth between the clinic and insurance. The clinic was doing everything in their power to make sure the doctor doing the actual procedure would be in-network for me. But finally, I’d had enough: I said, “I’m here. I’ll pay for this out of pocket, if I have to.”

Thankfully, the finance woman called at the end of the day and said they’d finally been able to figure it out. It was such a huge relief. We were already spending a thousand dollars on travel and a hotel room, as it was.

On having an abortion. Because I was 17.5 weeks, it was a two-day procedure. On the first day, we talked to the doctors, the resident, the nurses. They talked to us for about 2.5 hours — about the whole pregnancy up until now. We talked about how I was feeling, how this could affect any future pregnancies, my fertility. We talked about everything.

You have to sign a whole bunch of papers, and then you talk to a social worker, who works with you to set up a burial. But we ultimately chose to donate the body to research, since we’re both scientists. We hoped that it could advance science, in some small way.

Then, I had the laminara placement. Synthetic laminara is inserted into your cervix, which is supposed to dilate over the next 24 hours so they can do the evacuation. It was probably the most painful experience of my life.

After that, I got a prescription for some pretty hard-core painkillers. We just went back to the hotel and watched TV. Honestly, the painkillers were so strong I couldn’t really tell you what we did, beyond lying down.

The next morning, we got to the hospital very early. The doctors and the nurses were some of the best people I’ve ever interacted with. They just made me feel so cared for and comforted. They knew this was not viable, that this was a very wanted pregnancy. Despite everything, I felt so cared for, and very thankful to be at this particular facility.

They asked if I wanted general anesthetic or twilight. I chose general. I didn’t want to remember anything, or to have the option of remembering anything. They gave me something that made me feel pretty dopey. I just remember being in the OR, and the doctor held my hand. She was just talking to me and telling me to relax, saying calming things.

The next thing I remember, I woke up in the recovery room and my husband was there. I didn’t hurt anymore. I didn’t realize how much pain I’d been in, up until that point. I remember feeling so relieved. But I also felt so, so guilty about feeling relieved.

We were discharged two hours later. I went and sat in the hotel for the rest of the day, recovering. I needed my husband’s help a lot — I don’t think we ever anticipated that he’d need to learn how to change pads. But he knows now.

On the aftermath. I was very open, eventually, about what had happened. A lot of our friends hadn’t known we were pregnant. Most simply said that they were there for me whenever I needed it, and would help out however they could. Comments like these were helpful.  Even just saying “I’m sorry” was comforting. But a few times I received comments such as, “You are never given more than you can handle”, and “Everything happens for a reason.” While they came from good intentions, those comments were awful. We were given more than we could handle.

When we explained that we wouldn’t have been able to have a termination nearby, our friends were quite surprised by that. Even when I contacted a counselor in my town to ask for a recommendation for someone who might help me through this, the counselor said she couldn’t think of anyone. So I looked online and found a support group for women who’d had terminations for medical reasons, and that’s what helped me through it.

I’m not too sure if it’s politics or religion, or what, but there are not a lot of abortion providers where I live. There are limitations on facilities, despite the fact that it’s not a small town. We could have had an amnio where we live, but my doctor did not want to refer me to the doctor there — because of his “bedside manner.” We looked into it later and discovered that meant this doctor would have discouraged any decision toward termination and wouldn’t have given us that option. Coming from Canada, it just never occurred to me that this would be the case. And still — I’m very lucky. I could travel, I could afford to stay in a hotel overnight, and take a day off work. Most women can’t do that.

In the following weeks, we had the fetal tissue tested. Eight weeks later, we had an appointment and learned the full genetic results and confirmed that it was Down syndrome for sure. There were a laundry list of issues on the sheet, in addition. We also learned that it was a girl, which we had not wanted to know initially. Now, I’m glad we know — it did help with our closure.

On the possibility of a future pregnancy. In the first month after, I just wanted to be pregnant again. I just wanted that to look forward to. But after a month, that feeling subsided, a lot. At the advice of our doctor, we decided not to try to conceive for at least three months — plus, I wanted to make sure that I was emotionally and mentally prepared to go through the process again.

My doctor has told me that he’d like to be my doctor again, if I want that. And I do: I would hate to try another doctor in this region and find out that they would not support my decision, or not even take me as a patient. Plus, he gave me options and specialists that could help me, even when he couldn’t.

Right now, we’re just kind of waiting and seeing what happens. If I get pregnant again, I think I will be incredibly cautious, to be honest, about everything. I know that I did not cause this, that there was nothing I could have done to prevent it. I was incredibly careful: I took the vitamins, I was not eating sushi or lunchmeat, I was not taking Advil. But I think the next time, I will be hypervigilant, even more so than last time. Even though I know I don’t need to be. I think I’ll be hyperaware of everything that can go wrong. As excited as I’ll be, I’ll also be slightly reserved.

Before this, I was not as aware of the limitations that women have in the U.S., as opposed to where I came from. I had to wait three and a half weeks between the diagnosis and the termination, which was so hard on me. Some of the laws that are coming now — I find it so hard to imagine women who were not as fortunate as me having to deal with that. I just can’t imagine what it’s like for them, because I know what these women will have to go through.

The Canadian Woman Shocked by Reproductive Care in the U.S.