(This is long, and this is personal, so brace yourselves. Thank you so much for reading. For the TL:DR version, head to my instagram post.)
We were supposed to meet you somewhere around November 23rd, but that isn't ever going to happen. A couple months ago, on the day after Mother's Day, the day we were supposed to find out if you were a boy or a girl, we found out that you didn't have a heartbeat. And likely hadn't for about three weeks before that. It was a missed miscarriage, which something I never thought would happen to us. (Overconfidence, perhaps.) Although that day and that week, and the weeks that would follow were very sad and surreal, the information I started to gather then made the months leading up to that day make so much more sense. Because looking back, even though I tried to accept that all was going well, things felt very wrong.
After a couple of years of not planning to have another baby, my husband and I decided that we were open to the idea this past January, while we were away for a family trip to Taiwan. "What's worse" I said, "saying no now and changing our minds in five years when it might be more difficult, or just being open to the idea now and working it all out later if it happens?" I didn't exactly start on the road to parenthood early (to say the least) so I was worried that down the road would be too late. So, by mid March, I was pregnant. Easy! Was I (appropriately) thrilled? No. I was hit by a crushing wave of anxiety, depression, and physical illness that basically shut me down as a person. But isn't this how pregnancy works? Not in my past experience. I felt incredible for most of my first pregnancy, minus some very mild nausea for a few weeks in the first trimester. I worked out until the day I went into labour. I assumed my next pregnancy would be the same. When I was pregnant with my son, despite the fact that I was dealing with a pretty miserable situation at work at the time, I was optimistic and happy. This time, I could barely get up off the couch some days and didn't want to eat because I felt so sick. My brain was so foggy that things I said or wrote were riddled with errors, and I was so anxious about having another baby suddenly that I was just not functional for a while. When I told people this, I believed their well-meaning theories about all of that indicating that the pregnancy was healthy, or maybe I was just having a girl this time.
Not so much. There was an early additional clue that something was maybe wrong. My B hCG levels were tested at around 4 weeks in both pregnancies. But this time they were 5-6 times higher. Was I pregnant with multiples, maybe? It was possible, so my doctor sent me off for an ultrasound at 6.5 weeks. No - just one baby, and all looked normal. He mentioned that maybe I was just having my pregnancy blood test a little later than I thought this time vs. last, as B hCG levels double every couple of days at this stage. So it was possible my calculations were off.
So I continued on, sicker than sick, with an abdomen that felt curiously bloated instead of pregnant at times, brain in a fog. We realized that our current living situation was already cramped for the three of us, with both my husband and I having home offices, so we bought a bigger place to live in anticipation of our new arrival in the fall. Yup. We rushed out and BOUGHT A TOWNHOUSE (this is a big thing in a market like Toronto, to clarify). So let's let that sink in for a second. It was a big step for us that was definitely stretching our limits, but we thought it the best plan for our family. So another surge of anxiety around that. We told family and close friends around the nine week mark, and yes I know that is early but again, we felt confident based on past experience and sometimes you just need to explain why you are so irritable and feel like a pile of hot flaming garbage. I couldn't work out very much because I was so sick - I felt overheated and nauseous constantly, felt pretty miserable, and entirely unlike myself, body and mind. I wasn't happy at all. I realized at one point that I didn't even think about the baby at all, and I felt guilty for not feeling connected to this life in some way. It was just so different than before, and now of course I look back and see that my body and subconscious were throwing up all sorts of alarm signals.
So, what happened? The kind doctor that reviewed our ultrasound in those first few awful minutes gave us our first clues. He said that some things pointed to a couple of conditions - triploidy and partial molar pregnancy. (I know, you've probably never heard of these. And neither had I because they are pretty rare.) Often, but not always, they go hand in hand. Triploidy is a chromosomal abnormality that is always fatal, where the baby has 69 sets of chromosomes instead of 46. There is no genetic predisposition for this, no real correlation to parental age or anything else - it's just a random occurrence that rarely repeats itself in future pregnancies. It often coexists with a partial molar pregnancy - which is really tough to explain here, but can result in a placenta full of cysts that are multiplying out of control....and in even rarer cases can lead to or be a malignancy called choriocarcinoma. What happens in these cases is that your B hCG levels skyrocket more so than in normal pregnancies, leading to a lot of the symptoms I was feeling. So all of that was more sad and scary news. And let's remember....the baby was still there, even though it had probably passed a few weeks earlier.
I was booked for a D + C surgery to complete the miscarriage. Even that was complicated - I wanted this done ASAP for a number of reasons (my health in case I had a growing malignancy in my uterus, plus my peace of mind to end the pregnancy officially) - and I had to fight to get it done that week. I found out on a Monday and the surgery was schedule for the upcoming Friday afternoon at a different hospital. The hospital my OB was affiliated with wanted me to wait until the following Tuesday and I was just not having it as I was feeling increasingly ill, both physically and mentally. So that was a comedy of errors trying to make that happen - at one point I had to physically walk paperwork from one hospital to another to make sure the surgery happened. (Wow.) My husband (let's not forget he was going through this loss too) had a huge photoshoot booked for that week as well, and I told him I absolutely wanted him to go ahead with it, so he had to compartmentalize all of his emotions and move forward for that. So that week I pretty much cancelled everything and just mostly wandered around in a daze when I wasn't at medical appointments or taking care of our three year old son. He didn't know what was going on as we hadn't told him I was pregnant yet, but he definitely knew something was wrong with me, and he was affected by it. That was really hard for me to see. And, because we had told people that we were expecting, we had to go back and tell all of those people (though I am sure I missed a few) that I we were now not expecting. Thankfully, we had a wonderful support unit of family, friends and colleagues that made things easier for us, and I am eternally grateful for that.
I recovered quickly and immediately started feeling more like myself - which in itself helped in the healing process, even though we were definitely grieving. The next few weeks were a rollercoaster of hormonal emotional craziness coupled with tons of medical tests and appointments. My family doctor and TCM doctor were superstars in the level of care and compassion they have given me during this recovery. The pathology reports confirmed triploidy, but for some reason that is completely, frustratingly unbeknownst to me, leave out whether or not my placenta was tested for partial molar pregnancy, and the pathologist seems to have vanished because no one can track him/her down. Good times - because who would want THAT information? (sarcasm) I now have my blood tested regularly to track my B hCG levels, and thankfully they have dropped back down to where they should be (it could have taken much longer). As long as they stay there for a few months, I am in the clear in terms of choriocarcinoma. But I am not allowed to try and get pregnant again for now. As I mentioned, I'm on the older side of this maternity thing, so that makes me feel uneasy. Amongst other things.
And now, with all of that, you know why I call this miscarriage "very complicated." In no way am I trying to diminish what others have gone through. No way. Anyone that experiences pregnancy loss is going through an incredibly difficult set of physical and emotional circumstances. The nature of my condition, the health care system hiccups and especially the incomplete pathology report all are very frustrating. Will we try again? We'll see.
But at this point, I am feeling physically strong and mentally stronger as well, and I am thankful for that. I've gone through the guilt and the grief, the sadness and the anger. I don't write this to gain any sort of sympathy - we really feel like we have worked through this as a family and are emerging through to the other side. I'm sharing my story now because the thing that helped me the most - other than a wonderful group of family, close friends and medical professionals - are the people that shared their stories with me (you know who you are, and I thank you so much) because it made me feel less alone. I don't want anyone going through something like this to feel like they need to battle those emotions from a lonely place. The other things I have re-learned through this process are the following: you need to advocate for yourself in any health care scenario, listen to your body, and be kind - because you never know what someone else is going through.
And most importantly, there is power in telling your own story.