Originally I wasn't going to blog this, but I changed my mind, so now I have to go back four months and try to remember everything. So bear with me.
It started back in late December. We were out of town visiting family for Christmas. At some point, my wife discovered that a certain Aunt was late to the party. A quick trip to the drug store confirmed it; we had a baby on the way.
At first, we kept it quiet. Some people found out right away; let's just say it's difficult to keep such a secret from your friends at the annual Drunken New Year's Eve party. But we didn't shout it from the rooftops. After the last miscarriage, we wanted to see how things progressed before we got too excited.
Fast forward to February. The medical community considers my wife to be an "advanced age" for pregnancy, so they want to keep a close eye on her for certain complications (for example, older women are more likely to bear a child with Down's Syndrome.) They scheduled us an ultrasound for 11 weeks.
I remembered the drill from last time; Mom goes in first and Dad waits outside, until the ultrasound tech gets all of the important measurements done. Then Dad can come in and pester him or her with inane questions and gawk at the image on the screen. When I was allowed into the room, I had a flashback to my last visit. That one had ended with awkward silences, terse phone calls, and a trip across the street to our doctor's office where we were ushered into a room and delivered the bad news. It sucks all around, but I feel for the ultrasound tech. I mean, think about it. You're sitting in a room with a happy expectant couple, and you've just discovered that their unborn child is dead. But you're not allowed to tell them that. But they're standing right there in front of you. So you send them to their doctor, and then clean up the room for the next patient. Like I said, it sucks.
The result of that experience is that I'm on edge every time I walk into the ultrasound room. Everything is on hold while I watch the screen intently, waiting to see motion. I only relax once I see a heartbeat.
And this time, my stomach-knotting uneasiness was unfounded. The tech showed us a little alien-looking thing on the screen, confirmed that all the things they were looking for were indeed there, and we went on our way. Pretty routine.
Then we found out from our doctor that a routine blood test had shown a 50/50 chance that our child would develop Down Syndrome. We were scheduled for an NT ultrasound to confirm this result.
So we go in for another ultrasound. We had a different tech this time, but he was also very friendly, chatting with us while probing around my wife's exposed belly with the transducer. He took the appropriate measurements, commenting that things looked to be in the normal range, and also pointed out the developing bone structure. All in all, our fetus looked normal and healthy. The tech commented that he would be surprised if this baby developed Down Syndrome.
Everything seemed to settle down at this point, for a while. We had another appointment with our doctor, where we discussed the uncertain results from the blood tests. The doctor mentioned that the only way to be sure was to have an amniocentesis done, but that there are risks associated with the procedure. The doctor told us he'd look into it and get back to us.
A few weeks later, my wife phoned me at work and told me that the doctor's office had just called her; we had an appointment the day after tomorrow and there was a package for me to pick up, including a map.
Map?
The murkiness was resolved when I got my hands on the package. It contained an appointment list and instructions on how to get to BC Women's Hospital in Vancouver.
We don't live anywhere near Vancouver. So I hurriedly booked three days off work (one for the appointments, and one for travel on either side,) and ran home to pack.
The package also contained pre-procedure instructions for an amniocentesis. Wait, what? I thought we weren't there yet. But I didn't have time to think about it. I was in a mild state of panic, arranging hotels and worrying about how I was going to pay for everything while we were living hand-to-mouth. All I have to say is, thank goodness the Bank likes me. I just assumed they gave us the procedure information just-in-case, and left it at that.
So, after eight hours of driving, we arrive in Surrey, catch some sleep in our hotel room, and then ride the train into Vancouver proper. Since we live in the great hinterland beyond Hope, there aren't a lot of shopping opportunities for maternity clothes, so we stopped at a mall on the way in and picked up a few things.
After lunch, we get to the hospital and get checked in. A nurse ushers us into a room and lays down a bunch of informed consent forms for the amnio. She explains that there is another test called a NIPT test which samples the mother's blood rather than the amniotic fluid. However, it is not as definitive as an amnio. Also, it's not covered by medical, and it will take longer to get the results. She explains how increased the risk of miscarriage is as a result of the amnio, compared to the average pregnancy, and gives us a few minutes to watch a video of the procedure while we make up our minds.
The risk of miscarriage weighs heavily on our minds; my wife has had four so far, so we naturally figure that our risk is higher than average. But in the end, we decide to go ahead with the amnio. The certainty of the results of the amnio is worth the slightly increased risk of problems.
We move into the procedure room. Two doctors, a nurse, and an ultrasound tech. My wife on the ultrasound bed, and me sitting on a chair at her feet. One doctor is going to insert a needle into my wife's uterus, through her abdominal wall, in order to extract some amniotic fluid. The ultrasound tech is going to provide an image of my wife's innards so the doctor can see what she's doing. The other doctor is supervising. The nurse stands at my wife's head and distracts her. Everything seems to be going well, but then the room gets quiet. The tech and the doctors start talking in jargon and shorthand. The nurse chats up my wife in an attempt to distract her. I look around confused; it's only later that I realize what's happening.
This is the beginning of an "oh shit" moment. Something's happened, and it's bad.
The procedure is completed successfully, and we're immediately ushered into a room across the hall. It's a little meeting room with a table, some chairs, and a couch. The two doctors follow us in, and explain to us that, while they can't say anything official since we're too early in the pregnancy for a detailed ultrasound, the noticed while they were guiding the needle that the fetus has a fluid buildup uncharacteristic of a normal healthy fetus. They introduce us to a condition known as hydrops fetalis, and tell us that there's a very good chance that our baby will be stillborn, if the pregnancy even goes to term.
They said a bunch of other stuff at this point, about Down Syndrome, and preparing for the worst, and thinking about terminating the pregnancy, but honestly I don't recall most of it. I recall the tears, and the anguish.
I do recall that at no time did anyone ever use the word "abortion", even though that's exactly what we were talking about. We danced around the subject many times, but no one could speak its name directly, like doing so would bring forth one of the Elder Gods to smite us or something. At the time I thought it seemed kind of silly.
The doctors concluded with, "let's wait to see the results of the amnio," and left us alone. After we'd exhausted our emotional batteries, we rode the train back to our hotel. We would have liked nothing more than to go straight back and sleep the rest of the day away; maybe we would wake up in the morning and realize that it was all just a nightmare. But we had one thing to do first.
We returned to the maternity store we'd visited that morning and returned everything we'd purchased.
The next day, we drove home in a haze. We spent the weekend in a sickening purgatory, unsure what to do next.
On Monday, we had another ultrasound at our local hospital. The tech had the notes from the Vancouver visit, but it would be a couple more days before we got the results of the amnio. However, while a close inspection of the fetus revealed a fluid accumulation in the abdomen known as ascites, nothing else appeared out of the ordinary. This made us feel a little better, but only a little.
The next day we had an appointment with our doctor. He looked over the notes in our file with confusion. "I don't know why then sent you home," he said, "normally they're better than this."
He went on to explain that with results like this, the hospital should have kept us there, at least until the results of the amnio came in. He likened their breaking us the bad news to telling someone that they have cancer, and then explaining that it's an easily-treatable cancer that isn't that serious. It doesn't matter; after the first sentence, your patient's brain has shut down trying to wrap itself around the idea that they're going to die from cancer. We were also only a day early for the detailed ultrasound, so it would have made sense for the hospital to simply keep us there for an extra day, rather than sending us home. He told us that he was going to call the hospital and let us know, that day, what the heck was going on.
Well, we didn't get a call from him that day. The next day, my wife called the office in the morning and left a message. Having not heard back, she called again in the afternoon; the office was overbooked and she still couldn't talk to the doctor. The next day, she was preparing to head down to the office for a sit-in when the doctor phoned. He had a bunch of news.
First, the results of the amnio had come back. The test was negative, which means that chromosomal anomalies such as Down Syndrome were ruled out. Second, there was an investigation started at the hospital in Vancouver to determine why they'd screwed up so badly. And finally, we had an ultrasound at our local hospital, that afternoon. Images from that ultrasound were going to be sent to Vancouver so that a doctor could determine if our baby had anemia. Anemia is a possible cause of the ascites, and is treatable, but such treatment had to be carried out right away if it was needed. As such, the diagnosis flowing from this ultrasound would determine if my wife was going to Vancouver that night, or the following week.
So we headed back to the hospital. This time, the ultrasound tech went through the standard images, and showed us all of the organs, in their proper place. Then she went on to measure the blood flow through various blood vessels in the fetus. Then we were done.
Or so we thought. Less than an hour after leaving the hospital, we got a phone call. The doctors in Vancouver wanted more measurements. So my wife refilled her bladder and we went back.
This time, the ultrasound machine was connected to a videoconferencing device, and our ultrasound was streamed live to a doctor in Vancouver. He got the measurements he needed, and told us that, based on what he saw, he wasn't concerned about anemia. So there was no reason to rush down to Vancouver. However, they did want to keep an eye on the ascites, so we might come down later the following week.
When we got home, we got a phone call from the hospital in Vancouver. Since our appointments were scheduled for Tuesday morning, and the office was now closed for Easter, we couldn't reschedule for later in the week.
Two short-notice trips to Vancouver in three weeks. Doesn't exactly fit in well with my OCD "plan everything first" way of doing things. On the bright side, since we were going to be seeing both of our families over Easter weekend, we could interrogate them for information to bring to the appointment with the genetic counsellor. We headed back home a day early from our Easter weekend trip, and headed down to Vancouver Monday morning.
Our first appointment on Tuesday was with the genetic counsellor. She took all the information we'd gleaned from our families over the past weekend, and put it together into a nice family tree. She used stencils and everything. She also asked my wife many questions about her previous pregnancies. How long they ran, how they ended, etc.
After that we got another ultrasound. This one took a couple hours; the tech took a boatload of images and measurements, then a doctor came in and took some more measurements, and then the doctor called the ultrasound tech back in to take still more measurements. It was a high resolution machine, so the images were much more detailed than we had back home. They catalogued all the organs, took many measurements of the baby, and checked the blood flow of not only several vessels in the fetus, but also the arteries between mom and the placenta. Everyone was chatty the entire time, which I took as a good sign.
Then we had lunch in the hospital cafeteria. While we were eating, a team of doctors was poring over my wife's file.
After lunch, we met with one of the doctors from that team. After going over all the data, they had concluded that, well, that they were puzzled. On the bright side, they could tell us with certainty that it wasn't Down Syndrome, or Edward's Syndrome, or any other chromosomal abnormality identified in the standard PCR panel run on the amniotic fluid. They also knew that it wasn't anemia, nor was it fifth disease. They gave us even odds that we'd have one of three outcomes:
- The ascites would remain unchanged through the term of the pregnancy. One doctor mentioned that she'd delivered a baby in this condition, drained the abdominal fluid after birth, and it didn't come back
- The fluid would go away on its own before birth.
- The symptoms would develop into hydrops fetalis.
I took that to mean that we had two chances in three that the baby would be fine. But for now, we could only let the pregnancy progress and keep an eye on the situation. They scheduled us for another ultrasound at home in a couple weeks, and another in Vancouver in a month. They also took some more of my wife's blood to run another series of tests, looking for other infections that may have caused the fluid buildup.
So that's where we sit at 19 weeks. See why I'm exhausted?
