Embracing death

A recent study says that parents who hold their stillborn infants may be traumatized by the experience. Yes, the moments I spent with my dying newborn were the most painful of my life -- but they were also the richest.

By Susanna Stromberg

Aug 28, 2002 | It happened last December at a holiday party. I had mustered enough courage to go out into the world and meet new people. My fiancé had promised that if I started to panic, we could leave immediately. I took a deep breath, shoved my shaking hands into my jacket pockets and entered the party with a feigned smile.

In my previous life, before my baby died, I was a social butterfly. Now, as I stood in this dimly lit apartment, I found myself speechless and scared. What if someone showed up with an infant? After a quick survey of the room, I noticed that the closest thing to a monster was a heavily pregnant woman standing several feet away. My heart started racing but I decided to try to stay calm and wait out the evening. It had been months since we'd gone out, and I wanted to believe that almost five months after Anna's death, I could function in a social situation.

Everything that had transpired during my daughter's month-long life was still so palpable that I had difficulty stepping out of the nightmare and into the moment. Small talk seemed meaningless and false compared to the raw memories that I was still reliving: The sickening fear when I noticed she wasn't moving inside me. The emergency C-section when her heart rate decreased. The suction sound followed by silence as the doctors pulled my gray-blue unbreathing baby out of the small incision in my abdomen. The hushed whispers of the doctors as they worked to revive an otherwise stillborn baby.

There were the weeks spent in the neonatal intensive care unit with Anna hooked up to tubes and wires. Then the neurologist's devastating report that 90 percent of Anna's brain was irreparably destroyed due to a freak accident in the womb. Finally, the prognosis of severe cerebral palsy and an utter unawareness of her own existence. Our decision to let our terminally ill baby die. Her slow but peaceful death at home.

All of these memories flooded my brain and made small talk trivial, if not impossible. Surreptitiously I slipped another Xanax into my mouth.

A slender woman with frizzy black hair looked at me. Did I know her? Did she see me pop the pill? I smiled blankly as she walked in my direction. Then I recognized her. We developed photos at the same darkroom. I felt relieved. We had something in common to talk about.

We greeted each other. Then she asked a seemingly benign question: "Have you been doing photography long?"

I could have kept it simple and said, "No." But that didn't explain the reason I started or why I continue. Photography has been a lifesaver for me. In the darkroom I can slip into another reality -- free of grief -- as I watch images magically appear from blank paper. I feel like myself again, if only for a few hours.

I took a chance and said it: "My baby died ..."

The woman's face went pale. She stared at me as the words hung in the air between us. Then she mumbled something unintelligible under her breath, turned and walked to the other side of the room to join a group of people, none of whom, presumably, were talking about dead babies.

I was so surprised by her reaction that I almost started laughing. Shouldn't I, not her, have been speechless and uncomprehending? For me, speaking about Anna is a release, a way to maintain her memory. To remain silent and pretend she never existed feels false and claustrophobic. While I did not expect this woman to relate, her rudeness and my new role as social pariah stunned me.

Since Anna's death, I have discovered just how common this woman's reaction is. As psychotherapist Sukie Miller explains in her book "Finding Hope When a Child Dies," the inclination to deny the death of a child is rooted in our very language. "When your husband dies, you become a widow. When your wife dies, a widower," she writes. "Children who lose their parents are called orphans. But we have no name for the parent who loses a child ..."

This silencing, according to Miller, has grave consequences for the bereaved parent. "The fact that there is no name for the one who has lost a child is of enormous consequence: The nameless live in a kind of limbo. They still exist, but in a new stratosphere where their namelessness effectively isolates them from the rest of the world."

Our culture's need to erase or lessen the magnitude of painful events by trying to deny them is understandable. Caring for Anna as she died was by far the most difficult and isolating experience of my life. Ironically, it was also the richest and most life-affirming. Amid administering medicine rectally to control her seizures, soothing her as she choked on the smallest amount of water, and listening to her agonized breathing as her body began to break down, I got to hold our daughter, to kiss her and smell her. I got to feel, if only for a month, the purest form of love and heartbreak.

It has been more than a year since she died, and I continue to experience the long reach of grief in every part of my life; but the pain has lessened and I have positive memories of the short time I spent with my daughter. I have photographs of her father holding her, of our little family sitting together on the couch in the hospital, and I have the little blue hat that she wore.

For women whose babies are stillborn, the evidence of a real baby is not so tangible even as they grieve their absence. Having the opportunity to see and hold their stillborn babies is frightening and magical at once. Being provided with hand and footprints of the baby, and photographs, can be essential to their ability to come to terms with (not forget) their baby's existence.

And yet, a recent study by psychiatrist Patricia Hughes at St. George's Hospital Medical School in London, published in the Lancet medical journal, now potentially threatens a woman's future right to see or hold her stillborn baby.

Next Page: Seeing or holding her stillborn baby is integral to a mother's ability to work through her grief

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