A friend recently asked me if I was going to do a walk or anything else to mark Pregnancy and Infant Loss Remembrance Day, which is today, October 15. Even though I had five miscarriages, for some reason I can’t seem to bring myself to “celebrate” this day. I think we are supposed to light a candle at 7 pm. I guess it’s just not my style.
It’s not like I am “over” what happened to me. Not by a longshot. So why can’t I take the time to remember? The truth is, I don’t need a day to remember. I remember it every day of the year.
My losses live inside me like a parasite or tumor. I have held it at bay so far, using my writing as a medicine to keep it in check. It’s always there, though, in the back of my mind. It’s present in how I parent.
So when someone tells me to light a candle, it’s just not something I care to do. If it works for you, that’s great. It’s just not my thing.
Coincidentally, my most traumatic loss, the miscarriage of my daughter at 17 weeks (it seemed like a stillbirth to me, but that label isn’t given until 20 weeks) occurred in October as well. October 28. I don’t remember the dates of my other miscarriages, just a vague recollection of the time of year it was. But October 28 stays with me. It was a couple of days before the freak October snowstorm, which I wrote about last year in The Huffington Post.
The next year, thankfully the only year afterward that I remained childless, I did not want to do anything depressing to mark the day. Some people have a cake, but that seemed too morbid to me. But neither could I handle doing nothing — I couldn’t stand to be alone with my thoughts. So, I had to do something. I decided, against my more pessimistic nature, to try to uplift the day by doing something fun. So I planned a night away in New York City for me and my husband. I found a deal on a room at the Waldorf Astoria. In the afternoon, we drove in and went to the Metropolitan Museum of Art. I needed to be surrounded by beautiful things, priceless things that didn’t know time or place. Things that had existed before me, before my loss, and would exist after I was gone as well.
They gave me perspective.
If you ever visit the Met, be sure to check out the rooftop bar, where my husband and I enjoyed a glass of wine and a gorgeous view of Central Park before heading to our hotel. The Waldorf is another timeless New York institution, where all manner of famous people have stayed. A pianist played in the lobby bar at a piano that once belonged to Cole Porter. Once again, this was someplace that was bigger than my own little life.
We checked in to our luxurious room, fairly sizable for a NYC hotel, and got ready for dinner. We went to a swanky Greek restaurant, crowded and noisy and full of life. I was smiling. I was not depressed. It was amazing.
We made our way home and prepared for the big storm that was to hit the next day. Hurricane Sandy. One year after the freak snowstorm, another weird weather incident was about to happen. The coincidence was unnerving. But this time, instead of it being the worst day of my life, I was buoyed by our weekend away, a reaffirmation of our life, our marriage and the goodness of the world. I felt that life was still worth living.
Two months later, I conceived our son.
A year later in a sleep-deprived haze, I looked up from breastfeeding my newborn and asked my husband, “Do you know what today is?” “Yes,” was all he needed to say. I felt a twinge of guilt that we hadn’t done anything to remember our daughter on the day she was born. But I knew that I hadn’t really forgotten. Maybe, thanks to my son, I had simply found a way to move on.
Fellow miscarriage survivors, how do you deal with your grief? Will you do anything to mark Pregnancy and Infant Loss Remembrance Day?
A recent news piece about a couple who almost made a tragic decision – terminating a baby who turned out to be perfectly healthy – both angered me because of it’s inflammatory reporting and earned some sympathy for the couple. I, too, had some worrisome testing results in two of my pregnancies that caused me weeks of anguish. Here’s what I learned.
OK, so first of all, these blood tests only assess your risk. It bugs me when people say they had a “positive” test result. There is no such thing. Your result is either 1 in 1 million, 1 in 1000, 1 in 8, etc. Yes, there is a point at which you get red-flagged, but it’s still not “positive.” Likewise, there’s no such thing as a “false positive.” If your risk is 1 in 5 and you turn out to be one of the other four, it wasn’t false. It just means you were lucky. Only diagnostic testing can tell you for sure one way or the other.
When I was pregnant with my first baby to make it out of the first trimester, every test and ultrasound filled me with dread. I went to my MFM (maternal-fetal medicine, a.k.a. high risk doctor) for my NT scan with a ball of knots in my stomach, but my ultrasound turned out to be perfectly fine. My blood test results, however, were not. My baby had a significant risk of Down Syndrome.
“Mean Doctor,” as I like to refer to one doctor in the practice, did not make it any easier for me as she harshly explained the results. My pregnancy was already difficult enough, with bouts of heavy bleeding that had put me on bed rest. I was trying to run my magazine from my couch, and was stressed to the max. Now I had this to worry about. If I had further testing to be certain, it would be invasive – a CVS or an amnio. And with my pregnancy already so unstable, I didn’t want to risk miscarrying.
After the appointment I thought about what I would do if the baby had Down Syndrome. As much as I had gone through to have a baby, I couldn’t fathom the challenge that would be in front of us; and it was in fact our past struggles that were leading me to consider terminating. I didn’t think I could handle any more struggle in my life.
Unlike the couple in the news piece, though, I was not going to make any decisions until I had confirmation. I showed up for the amnio at 16 weeks completely stressed out and on the brink of tears. Mean Doctor (ugh, how had I ended up with her again?) came in before the procedure to make sure I understood that especially for this pregnancy, the procedure could induce a miscarriage. Wait a minute, I thought. Wasn’t this the woman who told me to have the amnio in the first place? Then the water works started. I told her my husband and I needed time to talk. She and the technician left the room. I couldn’t stop sobbing. It was just all too much to take.
“Please,” I said to Foggy Daddy. “Tell me what to do. I can’t make this decision.”
Normally one to let me make the decisions about the pregnancy, because, after all, it was my body, FD sighed. “I don’t think we should do it,” he said. I felt like a burden had been lifted off my shoulders.
The doctor came back in and we told her our decision. Later in the medical notes I read that she wrote we had decided not to have the amnio “after considerable deliberation.” FU, lady. FU.
We went home with no further answers than we had before. It turned out not to matter because a little over a week later I lost the pregnancy. Genetic testing was done and the baby, our daughter Samantha, did not have Down Syndrome. Part of me wondered if losing her was payback for considering terminating. But since then I’ve learned not to see the universe that way.
A year and a half later, when I got pregnant with LM and had the same results with the NT blood work, I wasn’t phased. There were no markers on our ultrasound for Down Syndrome, so I had a feeling that these “off” results were just something my body does. I would not risk miscarrying from a CVS or amnio, however small the chance, but now there was another option: more bloodwork that can more accurately test for genetic abnormalities. Brand names include MaterniT21 and Harmony, the latter of which my doctor ordered. Apparently there are some fetal cells in the mother’s blood that the lab can look at – but the first sample they took from me did not have enough cells to test. The second sample was the same. I was starting to lose hope, and resigned myself to the unknown. But the third and final sample finally yielded results. The genetic counselor left a message with the good news that the baby had a very low chance of Down Syndrome, and I replayed it over and over. “You’re hearing the same thing I’m hearing, right?” I asked FD. “Yes,” he reassured me. “We’re good.” After my past experience, I wouldn’t have considered terminating the pregnancy, but I was happy to have my mind put at ease.
Then at 16 weeks I had more bloodwork, something known as the “quad screen.” And more wonky results followed: I had high alpha-fetoprotein. Apparently this put the baby at risk for spina bifida and some other problems. When the doctor (not Mean Doctor, thank God) called me in, I saw the grave look on her face. I was, oddly, calm. I just didn’t believe there was anything wrong, that my body just doesn’t adhere to “norms.”And I was right – LM did not have spina bifida, or anything else.
This isn’t to say that I don’t believe in prenatal genetic testing. It’s a good way to cheaply, non-invasively assess risks, and can make you better prepared for the birth and care of a child with special needs. It is about much more than just termination. But the flip side of this testing is that it makes many more women worried than, in fact, need to be. I think it’s a necessary evil.
Did you do prenatal genetic testing? Why or why not?
As LM becomes a better sleeper and my mind becomes a little less foggy, I’ve been able to take a step back and reflect on my life before and after I had him. Certain things – smells, places, even songs – remind me of how different my life used to be, back when I was in the throngs of infertility treatments. It was such a dark time for me. I had thought about writing then, but I was worried that instead of helping, exploring my feelings would throw me into an even deeper depression. I was barely hanging on to my sanity, and I needed to keep my emotions in check lest they put me over the edge.
I’m finally in a place where I can look back on it with a clearer head. In some ways I want to forget about it, just pretend like it never happened. Now that I’m part of the mommy club, it’s like I’m a normal person. Like I fit in. Like I’m not a total freak.
But I don’t want to deny who I was, or who infertility made me. Because it did change me. It changed how I look at the world and how it works, how I feel about God or any kind of higher power, what I want out of my life and what kind of person I want to be. It cost me friendships, some of them dear ones that I didn’t think could ever be broken. It taught me to see good where I didn’t think there was any, and how to deal with the bad. It left scars. There are things that haunt me, that I don’t think I’ll ever get rid of.
Those of us who’ve done many, many treatments or had many losses call ourselves “veterans.” We went through our own personal battle. I’m not sure if military veterans consider it offensive when others use the metaphor of war to describe traumatic experiences. If that is the case, I apologize, but that’s what it felt like.
When you start out doing treatments you are all full of promise, so excited that you are finally getting help. The doctors have found out what is wrong, and they know how to fix it. You’re in their hands, and they are the experts. Couples doing their first IVF often have a sense of hopeful anticipation, that this is going to be the thing that solves all their problems.
And for many couples it does. But we veterans had been here a while. We looked on these rookies with cynicism, because we no longer felt anything resembling positivity. We watched couple after couple pass us by as they had success. But we were still here.
It was that way for the miscarriages, too. After we lost our daughter at 17 weeks, we went to a support group at our hospital. All the other couples kept saying things like, “when we have another baby” or “when we get pregnant again,” and it made me feel that my sadness was deeper than theirs (not that I want to play the Pain Olympics, which I’ll talk about in a later post) because I didn’t know if I would ever be pregnant again. Or even if I was, could I carry a baby to term? I had already had three prior miscarriages. Maybe that was my last shot.
I was in a hopeless situation. I couldn’t get pregnant without help, and I couldn’t stay pregnant once I was. Adoption was on the table but that involved so much, from home study visits to waiting to be picked to the fear the birth mother would change her mind. It seemed overwhelming. Plus, I just really wanted to experience pregnancy. That might seem selfish, but I felt like it was my right as a woman. I didn’t want to have to mourn the loss of that, too.
Sometimes it scares me how close I came to not having LM. I know I would have been a mom anyway, that I would have pushed myself through the adoption process and eventually I would have had a child. I wasn’t going to accept living child-free. I told myself that I could do it, I could be strong, even if it took years longer before we found a baby to adopt (or rather, before the birth mom found us).
LM was our last egg, our last hope. I had begged our fertility clinic to freeze whatever embryos we had left from our last cycle, no matter what shape they were in. And they did. We had two little guys, and they were both transferred on our last-ditch-effort frozen cycle.
The pregnancy did not go well at the beginning and I was sure I would lose him. But he hung on, and somewhere along the way I morphed from bitter infertile to fairly normal pregnant person to regular old mom.
Sometimes I feel like I’m hiding some big secret, like I’m pretending to be someone I’m not. I hang out with all the other normal moms and feel like I was rescued from a terrible fate. Like somehow someone lifted me up and pulled me out of my dark, depressing life and gave me a shiny new one. And that someone was my son.
Any other infertiles-turned-moms out there? How has your experience affected your life as a parent?
Thank you all for the kind responses to my Huffington Post piece, The Storm That Follows a Lost Pregnancy. One comment, though, got me thinking. A Facebook friend said, “That must have been hard to share.” In some ways, it was. I was nervous to have people who know me read my story; but I was not scared to have other people, the entire internet really, read it. Maybe because even though I’m giving my name, to strangers I still feel like I’m anonymous.
But why should I feel anxious about sharing it with the people in my life? Shouldn’t those be the people you want to share your struggles with?
I think there is still a pervading feeling in our culture that pregnancy loss, and infertility, shouldn’t be talked about. These issues are still hushed-up, still only whispered about, still stigmatized. Some people think that these things should be private, that they are nobody else’s business. And while it’s true that others should respect our privacy, is the real reason we feel these topics should be private because there is a sense of guilt and shame around them?
While trying to get pregnant, I saw differing ways of handing loss. Many women who miscarried said they wished they hadn’t told everyone they were pregnant because then after their loss, they had to “untell.” My feeling on this was…so what? I was pregnant and now I’m not anymore. Maybe then people can offer their support, if only to lend an “I’m sorry.” OK, it’s fair to just not want to talk about it to acquaintances you don’t know well. But keeping quiet also means we suffer alone because the world does not know the sorrow we are going through. Everyone will just expect us to carry on as normal, when inside we are in mourning.
After my Huff Post story, some people I know sent me private messages to tell me that they went through something similar, and I had no idea. Other people, mostly mom friends I’ve met since having my son, said they had no idea what I had gone through. And why would they – I had not talked about it. It’s hard to bring miscarriage into normal conversation. And if you do, you often just gloss over it because it can make people uncomfortable. I remember once a few months after losing my baby, I got a compliment from a very good friend on a necklace I was wearing. I thanked her and said it was to remember my daughter, and it stopped the conversation short. My friend and her husband were visibly uncomfortable. But why should they be? Why can’t we acknowledge miscarriage the way we do other deaths?
There is no word to describe someone who’s lost a pregnancy or a child. We simply don’t have the words to talk about something that so many people go through. And I want to change that. It wasn’t hard to share my story, because that’s what I want to do as a writer, a blogger and a woman. To talk about the things that we don’t talk about.
Do you have a story you want to share?
I wrote a piece about losing our daughter, Samantha, that was published on the Huffington Post for National Pregnancy and Infant Loss Remembrance Day. Please read it, share it, like it, comment on it, tweet it, etc. Remembering all our lost babies today.