Blog · October 16, 2018

Speaking About Stillbirth Shouldn’t be a Taboo

October is Pregnancy and Infant Loss Awareness Month, yet stillbirth is still one of the last taboos.

The Dictionary defines “stillbirth” as the birth of an infant that has died in the womb (strictly, after having survived through at least the first 28 weeks of pregnancy, earlier instances being regarded as abortion or miscarriage).

Somehow, at large, stillbirth is still not considered as the loss of a child. To anyone who has not had personal experience, it can be all too easy to underestimate the impact and the significance. Somehow it does not to count to others.

Speaking from personal experience, the death of a baby before birth is no less a death than the death of any other human being. A baby who dies before he or she is born is no less loved and cherished.

Like my grandma, who had a stillborn baby girl in the 1940s and talked about her, I never kept the fact that my Alex was stillborn a secret. Connor knew about Alex, I have pictures, even an amazing art rendering, let alone a book about my experience of losing him (Losing Alex), but he did not know about the miscarriage I had 6 months later until about a couple of years ago when I read him a chapter in my book where I talk about it (Butterfly Child). He was shocked.

I didn’t intentionally keep it a secret, it just never came up, I guess. So, yes, I miscarried a little girl in late 1995 at 8 weeks along. 1995 was an awful year. First, losing Alex in March, then having a miscarriage in October of the same year. Let’s just say I don’t look back at that year fondly. I cried more that year than I had before or since. I am sure EB had something to do with both losses. I will never know for sure of course, but my gut is telling me so. Damn you EB!!!!

My Alex would be 23 right now; “would be” because he is always in my thoughts. I know he’s around, his spirit always sends me messages. It’s really quite heartwarming. He’s just as much part of my life as my living children are. I treasure the pictures I have of him and I’ve accepted the fact that I am, and probably always will be coping.

I made this video for my online support group 20+ years ago. We all made videos to “swap around” with other grieving moms to help each other out. I put the highlights of my pregnancy with Alex, the delivery and the funeral and I put it to music. I am still not sure how I did that without a computer, but, alas. I’ve always been resourceful. That tape has been sitting around for 20 years and I never watched it again.

I was in the process of digitizing all sorts of VHS tapes for posterity a couple of years ago and when I came across it and I was strong enough to do it I started the transfer process. I still had to look away at some parts. I feel a lump in my throat that I can’t quite describe. It is what it is. I made this video public for the time being, but I know it may be hard to watch for most, so if I get negative feedback I will make it private. I’ll see how it goes. Thank you so much in advance for caring about my little angel in heaven.

As for grief, it comes in waves. At first you feel as if you’re drowning. Somehow you hold on to a piece of wreckage floating around you and all you can do is float. Stay alive. Barely. In the beginning, the waves are 100 feet tall and 10 seconds apart. After a while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but you learned to float better. You can breathe, you can function. There will be triggers. It might be a song, a picture, a smell. In between waves, there is life.

At some point you no longer notice the waves. Or maybe they are smaller. They may hit you harder during holidays or anniversaries, but they never really go away. It’s okay, because you’re surfing now. You learn how to and move on. And just because it’s been 20 years, that does not mean there are no triggers and no 100 feet waves.

A couple of years ago I was watching the pilot of a show called “This is us” and even after the show ended I could not stop sobbing. Connor came up to me a little while later, and not knowing what I was crying about, started talking about Alex. He hugged me and told me it was okay, Alex was okay etc. When I asked him how he “knew” that’s what I was crying about, he said he didn’t know how, he just “knew”.

Here’s the clip that sent me over the edge:

I find it interesting, even bizarre how my tear duct spontaneously go on overdrive when I remember that beautiful, horrible day that I held my stillborn baby. Watching this particular scene from the show, though, knowing that even this “fictional” Doctor can’t forget about his stillborn baby after half a century makes me feel better. I am not crazy. I will never forget. Alex is part of me, and nobody can ever tell me otherwise.

Sending love to all bereaved moms out there…