By Dr. Jen Gunter
There is a chance that you will receive a holiday card this year from someone who lost a baby right before or right after birth. Someone like me.
When someone who lost a baby puts together a holiday card, the family photo, if we are brave enough to include one, is never quite right because it is missing someone. The updates we write about our lives are always incomplete because there is an untold story. We are perpetual hosts to a spirit that not even Dickens imagined, the Ghost of a Christmas That Can Never Be.
In the United States there were over 23,000 stillbirths in 2013 and another 12,900 babies who died in their first week of life, according to a Centers for Disease Control report. Together these losses are known medically as perinatal deaths, and worldwide there are 4.1 million each year. At age 36, I joined this saddest sorority of mothers who gave birth but have no baby. Since then, tens of millions around the world have joined me.
For most of us, there was no chest that we watched rise and fall. No skin that was ever warm. No smell other than that of a hospital. For some mothers, like me, there was a brief life, but the things being done to us or to our babies to try to keep us and them alive prevented us from ever touching our children while they lived. A few mothers may have several hours or days of memories.
We know we delivered, but then the timeline stops. We look frantically for the next page, but it will always be blank. My imagination does simultaneously beautiful and terrible things with these unwritten pages. Would his hair be curly or wavy? Would his eyes be dark brown or amber? Would he love dragons or “My Little Pony” or something entirely different that I cannot possibly imagine?
Questions that can never be answered are so very hard.
Society does not like to hear from us castaway mothers. You may not even know that your friend or cousin or even your own mother lost a baby before or shortly after birth. That is how secret we have learned to be. Our grief carries shame and stigma. Do you wonder if it is our fault? Are you worried it is contagious? Is it just too much for you to imagine what we bear? There’s no word or phrase that names a mother who is wheeled to the hospital doors without her baby in her arms — just a stark picture.
For years, everyone, doctors included, thought it best to wipe nurseries clean, as if removing a crib or giving away the diapers your friend dropped off erased the memory that you delivered a baby. We know what happened to our bodies. We know what we have lost. You owe us this recognition instead of silence and uncomfortable glances.
To get through our lives we members of this quietly sad community must constantly run the gantlet of “do we tell or don’t we tell?” Here is how it goes for me: I have two 14-year-old boys, so everyone asks if they are twins. Each time I answer, my wound is ripped open. The only choice I have is: Do you get to see me bleed or not? I can spare the casual or often not-so-casual inquirer the discomfort of knowing my truth, my son’s truth, and say, “twins.” When I do this, I bleed viscerally. No one can see, but I feel the pain of my betrayal.
I can also leak my sorrow out into the ether as I explain that my sons are triplets and Aidan, my first born, died very shortly after birth. If I do this, I know there will be a terrible pause because nothing sucks the life out of the room faster than telling someone you had a dead baby. The other person will quickly say, “I’m so sorry.” What do I say in reply? “That’s O.K.”?
It is most definitely not O.K.
As soon as the words that proclaim I had a third son leave my lips, I regret them. I feel responsible for the uncomfortable atmosphere generated by the sorrow I was not supposed to share. I do not want to be excluded anymore than I already feel, so I hastily gather the remnants of my sadness back inside where they can cut only me. My face will fold and unfold like an origami project that missed a crucial crease 10 steps back as I try, often unsuccessfully, not to cry.
The sorrow of perinatal death has even silenced medicine. I should know, because I am an obstetrician and gynecologist and I received no training on how to help my patients. While there are studies showing the emotional, physical and socioeconomic devastation of perinatal death, we rarely address it in a concrete manner that has any hope of helping women like me. Sometimes we get lumped in with postpartum depression, and although many of us may be depressed, it does not seem medically correct or fair to use that category for those of us with no baby.
I am amazed that I knew so little about this silent sorrow because I have more experience with perinatal death than most in my field. I am trained to do second trimester dilation and evacuations (D&Es), a technique sometimes used for surgical abortions. (Some abortion opponents want to ban such surgery.)
We also use this procedure to help some mothers with premature stillbirths. Not everyone can stand to deliver their stillborn baby on an obstetric ward where most other mothers go home with the ultimate prize. Sometimes the only medical comfort we have to offer is going to sleep and waking up when it is over.
A few months after my two surviving boys came home, I went back to work, Aidan’s ashes still in my closet because I didn’t have the courage to bury him in any city where I thought I might not live the rest of my life. One of my first nights on call I did a dilation and evacuation for a woman whose baby died at approximately the same age as Aidan. I don’t remember the details, but I remember her face at her follow-up visit. I could see her emotions had nowhere to go, and that was tearing her apart from the inside. I saw myself.
I put my hand on hers and said, “I know.”
She just looked at me. “How do you get through it?” she asked.
We’re not supposed to inject the bias of our own lives in medicine, and yet the testimony that I had been through a loss and was still here was the only medical care that I could offer. That and breaking the silence.
If you know someone who had a perinatal loss, give a thought to how hard it must have been to send that holiday card. To pose a family interrupted for a picture or to write updates knowing there was a story left untold. Give a thought also to the ones who didn’t send cards. Some years are just too hard, even now, 14 years later.
We shouldn’t have to swallow our sorrow for the comfort of society, so if someone is brave enough to speak the truth of their Aidan, please listen. Just sit still and let us spill our shards because maybe if they do not have to be collected so quickly, they will lose just a little bit of their sharpness.
We have not evolved enough to care for women like me, not yet anyway. But I have hope that if you can listen and let us speak our truths, perhaps one day we will get there.
nytimes.com/2017/12/21/style/perinatal-death-stillbirth-childbirth.html
