October: Pregnancy & Infant Loss Awareness Month

On January 3rd, 2014 at 1:02 AM, I delivered our first daughter, Quinn, with Rob at my side.  Quinn was stillborn.  She had passed away four days earlier.  I was 26 weeks pregnant and admitted to the hospital with an extensive blood clot in my left leg that extended from my toes to my belly button.  On the morning of December 30th, Quinn's heartbeat slowed dramatically and then stopped as we were rushing to the operating room to consider an emergency c-section.  It defies nature that Quinn's date of death precedes her birthday.

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Until it applied to me, I wasn't aware that October is SIDS, Pregnancy, and Infant Loss Awareness Month.  This isn't a topic people like to hear or think about, especially expecting or new parents, but it is a reality that many, many people struggle to comprehend every day.

Each and every day, 13 babies will be lost to SIDS and other sudden, unexpected infant deaths.  1% of all pregnancies will end in stillbirth (defined as fetal loss 20 or more weeks after a woman becomes pregnant).  And the number of babies lost to miscarriage is far greater.

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There are no words to describe what it is like to lose your unborn child.  When a living person dies, there are rituals and social norms that are observed, but when a child is stillborn there is a lot of silence.  It makes people uncomfortable and many seem to think that mentioning your baby will make you sad -- as if you don't think about your baby constantly.  It makes reasonable questions like, "Do you have any children?" or "Do you only have one child?" unanswerable ones.  Instead of thinking about finalizing your registry and decorating your baby's nursery, you decide whether she will be buried or cremated, whether you'll have a service, whether you'll give her a name, whether you'll hold her when she's born, whether you'll take family photos, and a host of other questions for which you have no answer.  And even after making these impossible decisions, I still have regrets.  I regret not holding Quinn longer. I regret not having photos taken with her.  I regret that when I held her I was in a drug-induced haze and desperately wish I had asked to see her again the next morning.  I regret not being a better mother to her in the few moments that I had with her.

There isn't a day that goes by in which a wave of grief doesn't wash over me.  Sometimes I know it is coming, like when I let myself read a sad book because I need to cry or someone else tells me a story of loss.  Other times it catches me off-guard or is triggered by something that stops me in my tracks: hearing another parent call their daughter Quinn, meeting a child who would be her age (she would be two and a half), someone asking if we'll have another child, and sometimes just seeing someone else who is pregnant.  Emily Rapp eloquently captures this feeling in her heartbreaking novel The Still Point of the Turning World: "Grief, I realized, is watery and trembling and always exists beneath the surface of real life; just a gentle touch and its spilling everywhere.  The seams are easy, too easy, to split.  And that's when the real stories come out... These babies lived lives that could not be easily recalled, but what did that mean, to quantify or render a life."

Before we lost Quinn, I thought of myself as lucky.  Life had progressed in a relatively smooth fashion for me.  Yes, I worked hard, but I certainly caught a few breaks that had made my life pretty incredible.  I first read about stillbirth in this haunting piece by Kate Suddes.  I was five months pregnant with Quinn at the time.  I read the first half of the article and couldn't continue because the idea that such a devastating, horrible tragedy could happen was unfathomable.  We had struggled mightily to get pregnant and so I naively told myself to put it out of my mind because this couldn't possibly happen to us.  I remember passing the 24-week mark of my pregnancy and reading to Rob that we had reached viability and feeling like now we could breath a sign of relief. 

The loss of Quinn, coupled with a miscarriage in the spring of 2016 and the recent loss of my dear friend made me question the concept of luck.  I've realized that there is just real life and we all face different challenges and realities, and at some point in every life there will be adversity. As Rapp so eloquently states, "life—not luck—will find you eventually." 

There are myriad ways in which losing Quinn has changed me, some for the better and some for the worse.  I have a great deal more empathy for loss.  I resist the urge to offer platitudes.  I know better than to compare and am careful not to, particularly as it relates to loss.  I ask more questions about people who have passed away, try to remember and acknowledge anniversaries, or just let people know I'm thinking of them.  I'm no longer afraid to tell people about Quinn or to respond to awkward inquiries about my fertility, the size of our family, or my "birth story" honestly and without concern for whether I may offend or scare someone.  For better or for worse, I now have little tolerance for people not showing up or brushing the "real" stuff under the rug.  My capacity for friendship runs deep but not wide.  I have, at times, found it impossible to forgive.

What I do know is that Blythe is the light that pulled Rob and me from our grief.  Blythe's very name signifies this incredible role she plays in her family - it means "happy and joyous."  Blythe was born two days shy of the one-year anniversary of Quinn's death in the same hospital and delivered by the same doctor.   Many of the same nurses cared for us and remembered us from the prior year.  We spent our second New Year's Eve in the hospital, but thankfully under dramatically different circumstances.  

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There were several resources I found exceptionally helpful, some of which are focused on stillbirth and others that deal with loss generally.  The most comforting thing that I did was finding others who had suffered losses either in person or in writing.  For anyone interested, you should read the article I mentioned above by Kate Suddes entitled "I had a stillborn baby" from Cup of Jo.   "The Art of Presence" and "The Art of Condolence" (both NY Times articles) are excellent reads that provide advice for how to be supportive of someone who is grieving in any situation.  If you find yourself at a loss for words, send a card.  The memoir "An Exact Replica of a Figment of My Imagination" was the first book I read after losing Quinn.  It made me feel less lonely and every page resonated with me.  If you want a better understanding of what such a loss is like, it's the book to read.  There was a movie recently released starring Minnie Driver called "Return to Zero" about a couple who has a stillborn baby.  It wasn't released in the theater, but it can be found on Amazon and, I think, is replayed from time to time on Lifetime.  It is a very accurate portrayal of everything related to stillbirth.  I'm currently reading "The Still Point of the Turning World," written by a woman whose son died of Tay-Sachs very early in life.  Her writing is beautiful and she does a tremendous job capturing grief in words.

Thank you for letting me share our story.  To learn more about Remembrance Day and the "wave of light" on October 15th at 7 PM (in every time zone), please visit First Candle.  Now I Lay Me Down to Sleep is an organization that trains, educates, and mobilizes photographers to provide portraits to families facing the loss of an infant.  If it weren't for NILMDTS, we wouldn't have a single photo of Quinn -- the NILMDTS website also has resources about October 15th.  If you have a friend or family member who has lost a pregnancy or an infant, let them know they are in your thoughts.