Last year, at nearly six months pregnant, I delivered my first child stillborn after learning he had a severe congenital heart malformation resulting in two heart chambers instead of four. His survival outside my womb would have been impossible without a series of painful interventions to try to prolong, but not promise his life. My husband and I chose to interrupt my pregnancy in order to spare our son that suffering. In my grief, which was layered, unwieldy, and foreign to everyone I knew, I searched for memoirs by other mothers like me. I needed true stories—hard, honest accounts of survival in order to believe that I, too, would survive such a loss, such a choice.
I found that story in Monica Wesolowska’s recent memoir [booklink isbn=”098600071X” title=”Holding Silvan: A Brief Life”], well received by writers such as Abraham Verghese, Ayelet Waldman, and Michael Cunningham. Wesolowska, who teaches Creative Writing at the University of California, Berkeley Extension, started writing this, her first book, eight years after she and her husband, David, decided not to prolong their infant son’s suffering when he was severely brain damaged during delivery. I found another first-time mother who was somehow surviving, as was her marriage (40 percent of partnerships do not weather this kind of loss). She and David went on to have two boys, now seven and nine, who survived their journeys into the world. What I didn’t expect to find in Wesolowska’s memoir was such a fluid analysis of our modern-day medical system and how choices made from fierce, parental love may not fit within the paradigm of ethics committees, medical science, individual religious beliefs, what constitutes a “good” or a “bad” death, or our simple, human hope for a miracle. (Which is not to say that Wesolowska’s story is without hope.)
Grief memoirs are plentiful. Joan Didion’s [booklink isbn=”140004314X” title=”The Year of Magical Thinking”] and Francisco Goldman’s [booklink isbn=”0802119816″ title=”Say Her Name”] come to mind. Topics of death and dying in our culture are not as stigmatized when they pertain to terminal illness or accidental death. However, we see a serious lack when it comes to books about grieving the babies we may lose to miscarriage, stillbirth, or infant death. In taking us step-by-step through Silvan’s brief life and lasting significance, Wesolowska’s memoir provides a bridge across that gulf, both for bereaved parents and those who know them.
We need this bridge because, often, we don’t know how to publicly mourn what should have been brand new life, and failure to mourn further isolates our losses. Without heavy-handedness, Wesolowska shows us the sting when a friend suggests, “This would be a lot harder if you already had children and knew how much you were going to lose.” She writes, “It pains me that she hasn’t yet realized he is my child.”
Wesolowska’s prose is revealing, sometimes stark, but this does not insulate her story from a general audience, an inherent risk when writing tragedy. From the first scene—where Wesolowska receives a call that her full-term, hours-old son is not in fact waiting in the nursery to be breastfed, but is being transferred to another hospital on account of unexplained seizures—we too begin to wonder what we would do for this baby. The worst-case scenario is still far from view because, as she writes, “nine months of hope is a hard habit to break.” But after scores of tests and specialists, the closest “answer” is that Silvan was somehow deprived of oxygen during labor, leading to brain and central nervous system damage so acute that his life will consist of what he can do with only a functioning brain stem: reflexes to punctuate an otherwise vegetative, tentative state.
While Silvan’s outcome may be rare, asphyxia of some kind occurs in one out of ten births worldwide. As Wesolowska explains: “In the United States, asphyxia remains the tenth leading cause of neonatal death. Many of these cases are inexplicable,” as Silvan’s proves to be. But medical information is not enough “to make sense of what is happening,” Wesolowska writes, relying on the immediacy of the present tense to tell us everything we’ll ever know about Silvan. “There’s something else I need—and when David asks in bed what will make it easier, I know what it is. ‘I want people to see him, my baby.’” Thus arrives a wave of family, friends, nurses, and neighbors who all help to hold Silvan for the entirety of his brief life. In woven flashbacks, we also learn more about Wesolowska’s relationships with several of these visitors, scenes which shed light on her Catholic upbringing, her previous encounters with loss, as well as her courtship with David. In stories like these, fathers’ grief can be sidelined as they attend to the emotional and physical recovery of their partners; it’s refreshing that David is a constant presence, buffer, and co-parent.
But the urgency is in the present and ongoing action, where I felt most drawn as a reader. During a month set in “the dreaded NICU, a world where parents must dress in hospital scrubs to hold their children,” David and Wesolowka decide to make an end-of-life decision for their child at what should have been the very beginning. While euthanasia is illegal, “it is legal to withdraw all food and liquid,” raising questions about how our medical and legal systems allow or disallow us to exercise compassion. It is excruciating enough to weigh quality versus quantity of life for one’s child within the privacy of a family, but David and Wesolowska, her love for Silvan, “rearing up inside of me on its hind legs like a bear with claws extended,” must validate this choice to an ethics committee so that “no one can force me to make my baby suffer life”—a moment that begs further thought about the choices strangers try to make for our children. Consultations with these committees are now necessary because with modern medicine, as she explains, “most people die of a choice to stop treating whatever disease they have.” As medical interventions have also become more extreme, we often perpetuate and cling to the stories of those who make it, who are saved by medicine. As Wesolowska writes, “And how hidden and underreported the other story—that of children who go on to live on the tortured edge between life and death for years.” Implicit here is the need for Silvan’s story.
That “tortured edge” is precisely what they spare Silvan, and an almost enviable certainty buffers their choice: “there seems no justification for stalling… If I love him, I will let him go.” This certainty, however, should not be confused with willingness or denial of the suffering they spare themselves in sparing Silvan. Still, as often happens when we are at our most vulnerable, moments of untainted beauty emerge, such as when David and Wesolowska finally bring Silvan home, as any new parents would, and do his laundry, draw his bath, and rock him in the outdoor swing Wesolowska bought when she “imagined being a nursing mother this first summer of his life.” After all, “My time is limited,” she writes. “This is a mother’s love distilled.” This is also perhaps the book’s most heartbreaking section because, having traveled her choice with her, we sense an inkling of her torn need to both hold on and let go: “Desperate for him to stop breathing, I am in love with every breath he takes.”
Wesolowska writes early on, “I am his mother, even if he is not in my arms.” Indeed, years after Silvan’s death, and on every page of this book, she is. Meanwhile, she weaves a story that is larger than one mother’s loss. She informs a necessary conversation about the value of life and, most admirably, leaves us hopeful that we can draw understanding from our darkest hours. As Wesolowska learns from one of her first experiences with death, “part of what makes absence acceptable is the life story that precedes it, the life story that remains.” With inchoate lives like Silvan’s, like my son’s, it’s just as critical to try and hold what does remain. As Wesolowska writes, “Holding him is for all of us.”
October is National Pregnancy and Infant Loss Awareness Month.