Holding Silvan

by Monica Wesolowska

  There are reasons doctors made more of these decisions in the past. In the past, doctors tended to know their patients well, sometimes since birth. They paid house calls, they knew their patients’ families and lifestyles, they could make decisions that fit the patient’s sense of life and death. But these days, medical treatment and technology change so rapidly that there are more specialists to consult, and our personal doctors are less reliable, more dependent on whatever health insurance we are lucky enough to have. For many, the family unit is also less stable, fewer patients belong to a church or a cultural group with distinct beliefs and rituals around death. The choices to be made are now more complex.

  In such a climate, the need for patients to have individual authority has increased. We want to have the final say on what happens to our own bodies – or, in the case of our children, what happens to theirs – since there are so many options. We have a patients’ bill of rights. But doctors, too, have autonomy. They also have their code of ethics. And when the patients’ and the doctors’ codes of ethics come into conflict, there has to be a formal place to come together to make a decision, a place to simulate the community that used to help with such decisions in the past. It is not a ruling body, but a body that gives recommendations. There are codes of ethics they may follow, but each case is different in its specificity. In the case of a baby like Silvan who has lived too little of life to have an opinion about death, it is the lives of the parents that have to be looked to in order to make a decision. Only if no agreement can be reached does a case end up in the courts.

  But we don’t understand yet what the ethics committee is for and so the time between Dr. Z telling us that he is requesting a meeting and the time that it happens – though it spans only a few days – stretches horribly.

  IN A FRENZY of anxiety, we ask friends for referrals to other hospitals. We contact the director of a pediatric ward in another major hospital who says that his hospital would agree with our decision and that he could have Silvan transferred there. He is very nice, reassuring, reasonable. We also talk to a nurse in his hospital who runs one of the first palliative care wings for children to be built in a hospital in this country. She says that we don’t actually need to be transferred. She says she can arrange to have us sent home with one of the rare hospice organizations that works with children. That way we won’t have to continue feeling that we are at odds with our doctor while retaining some institutional support.

  We try to tell Dr. Z how anxious we are. But he’s been vague enough in his answers about convening the meeting that when he says, “This is not about antagonism,” we can’t believe him.

  Not even Dr. A can help. We run into him one day. Though he is not on service anymore, there he is rushing down a hospital corridor. He knows about the ethics committee meeting. In that usual, straightforward and empathetic way that we take such comfort in, he says, “You should not think of this as a battle. This is for you, so that everyone agrees…”

  “But Dr. Z doesn’t agree with us,” we say.

  “You don’t know that,” he says. “All you know is that he is not comfortable proceeding without this meeting.”

  “But what does that mean ‘he is not comfortable’?”

  “You should not think of this as a battle. This is for you…” Dr. A repeats in his soothing voice, and we are disappointed that even he has abandoned us. We cannot hear what he is saying. We suspect everyone of duplicity, we hear only platitudes.

  BEFORE THE MEETING, David researches the tenets of medical ethics. “Here they are,” he says, “beneficence, non-maleficence, autonomy, and justice.”

  “Great,” I say. “And how does that help?”

  He tries to explain. “Beneficence means you should do what benefits the patient. Non-maleficence means you should not harm the patient. Autonomy means you should respect the patient’s wishes. Justice means you should treat all patients equally, which includes allocating resources equitably.”

  “And how does that help?” I repeat. I know he’s finding this research somewhat soothing. I know that he and I are different because he is a man and I am a woman, or because we’re just different people, but his insistence on these four terms is bewildering. We are sitting at the dining room table, picking at dinner. We are fed by friends. Every night someone else drops off a different meal so that all we have to do is lift our forks while we figure out what to do about Silvan, or rush to return to the hospital to hold him. We’ve unpacked nothing since his birth. Whatever I took to the hospital during labor lies against the walls, still stuffed inside those plastic bags stamped with large blue letters that read: Patient Belongings. Those belongings are indeed patient as they lie against the wall, but there is no room in my mind for unpacking them; no room for cooking, nor for anything not related to Silvan.

  David begins to define the terms again, but it all sounds so contradictory – which it is. What benefits Silvan might also harm him, what is good for him might not be good for others. Because of such conflicts between terms, the right medical decisions are not always obvious. “How would you even use those terms to make our case?” I ask.

  He says, “I don’t know. All I can think about is my cousin and how much her parents have suffered over her.”

  I know what he means. It took years for them to tease apart the various problems that have added up to her developmental delay, years to figure out what services she could receive to make her life manageable, years even to communicate with her calmly. She is now an adult living hours away in a publicly-funded group home; they spend the bulk of their free time driving back and forth to see her. I know they must worry about her future once they are gone. And I know that they love her. I push away my plate, suddenly disgusted with David. “But you can’t say that, can you? I mean, that’s selfish.”

  “But people aren’t isolated. They belong to a community,” he says.

  I agree with him about community, but I am angry now. I remember his early doubts about my ability to mother well. Who is the selfish one now? “Whenever you get pregnant,” I say righteously, “you never know what you’re going to get, or how much you’re going to have to sacrifice.”

  “ I know,” David says. “That’s always scared me.”

  “So what are you saying? That you’ve changed your mind about having a child now that we have one?”

  “So what are you saying?” he says. “I mean, you can’t do this for me. If we want to stay married, we both have to believe this is right.”

  Both of our plates are now pushed away, our appetites gone.

  After a moment of silence, David goes on. “It’s true,” he admits, “I worry about being selfish, about trying to get out of taking care of him. Don’t you?” He tries to take my hand across the table.

  “God no!” I say, ignoring that hand. “I think it would be selfish of us to keep him alive. I mean, a part of me would just like to keep him with me always, smelling his sweet head and knowing I’m being good by taking care of him, but I think that would be wrong for him so I am sacrificing what I want for his sake.”

  “You wouldn’t really want to do that,” David persists softly, earnestly. “You wouldn’t really want to devote your life to him, would you?”

  In this moment, how grateful I am to have married him. With his honesty, he is not just insulting my Day-Glo headscarf or my potential for motherhood anymore, he’s asking me to examine my deepest most secret self. I take his hand. Perhaps he’s right. Though I know I have it in me to mother Silvan as much as he needs, perhaps a part of this decision is selfish, perhaps I am just as relieved as David that my life from here on out can be spared round-the-clock vigilance for an incapacitated son. I hang on to that hand.

  “Maybe you’re right,” I say. “Maybe I just like imagining that I’m sacrificing my desire to keep him alive for his sake. Maybe I’m lying to myself.”

  As soon as I admit as much, the honesty makes everything clear. How lucky we are that this makes sense to us on all levels. W
e believe that Silvan should be allowed to die not only for his sake but for all of ours.

  Chance of Regret

  ON SILVAN’S TWELFTH DAY, THE ETHICS COMMITTEE meeting takes place in the basement of the hospital. What David and I are doing, we will later learn, is unusual. Prior to us, few parents have made this particular choice in this particular hospital. In a strange reversal from the time of Karen Ann Quinlan, most parents who come to ethics committees these days come to fight for the right to a miracle. But we are unaware of how we may be fitting into the arc of medical history; we simply have a feeling between us and are hoping we will have the language to express it.

  Sister C leads us there from Silvan’s room, David, David’s father Larry, and me. David wants Larry there as a third, calmer witness to the proceedings. Sister C has lost her soothing tone in favor of a lighthearted efficiency. As she leads us into the bowels of the building, she banters about the latest improvements to the hospital. She leads us down corridors and into elevators and eventually into a large, windowless room. Despite fluorescent lighting, the room recedes before us into gloom. In front of us: three empty chairs. Seated around the conference table beyond our chairs, maybe twenty people, though it seems like more. We recognize almost no one. There is Silvan’s sweet nurse Kerry, and an intern we know, Sister C, and of course, Dr. Z. The rest are a blur of suits and skirts. They are all silent, waiting.

  The director of the ethics committee is a familiar-looking, older woman with graying, tousled hair. That helps. She invites us to sit. Friendly but businesslike, she introduces herself and asks everyone else at the table to introduce themselves one by one.

  David has a pen and paper with which he draws a diagram of the table, where each person sits, who each person is – Dr. Z, Nurse Kerry, a medical ethicist, legal counsel, a lay person whose child once died in this hospital. David is still convinced that this will be a grueling debate and that he will need to know who his allies are, who his enemies.

  I, on the other hand, am beginning to believe Dr. Z that this is for us. Considering my love for Silvan, it seems impossible that they will disagree. The night before, rounding the corner to our street after leaving Silvan at the hospital for the night, I felt my love for him rearing up inside of me on its hind legs like a bear with claws extended. No one can force me to make my baby suffer life.

  Introductions over, it is our turn.

  Despite his preparations, David is without a speech. He turns to me. “Do you want to start?” Yes! With that beast of love reared up inside me, I say, “No one in this room could want to feed my son as much as I do.” In my breasts, I feel stirring whatever milk remains.

  Now what? I think.

  I have to stop and catch my breath, blow my nose. On the other side of David, Larry realizes he will not be the calm witness after all. Like everyone else, he will later tell me, he is tearing up. But at the time, I’m unaware of other people’s emotions. I am aware only of my own words, that cocoon I need to weave around my son.

  Without a speech prepared, I tilt between instinct and intellect. At last, I go with intellect. “ What we don’t know, however, is if he could eat if he tried. He seems to be sucking, but we don’t know if he can coordinate sucking with swallowing and gagging. So it’s possible he could choke and die. Or, if he can’t protect his airway, that he’ll get pneumonia and die. Or that he’ll only be able to eat enough to prolong his starvation, which I think would be worse. And somewhere down the road, even if he can learn to eat, we’ll have to make another decision. What if he gets pneumonia, or if his seizures return, or he stops breathing again? Where’s the line? When’s enough? So far he hasn’t even known the discomfort of eating, gagging, gas, poopy diapers. All he’s known in life is love. Since he came into the world through love, since he’s been surrounded by it, I’d like him to leave knowing nothing else but love…”

  Go on, I think, go on. I feel as though I’ve only made an introduction here, given the background. My voice has ended on an uptone, expecting more facts, more persuasive logic, something to come out, but then I hear my final word: love.

  It is not everything, of course. I feel deceptive for not having strayed beyond my love for Silvan, afraid to lose the argument if I appear to care for anyone but him. And yet, what is the difference between Silvan and me? The lines between us are still blurry, fresh as he is from my womb. When I close my eyes for a nap, I still feel that I am him. When I touch my face, I’m startled to find my own nose there. And anyway, in the incredible way of our marriage in this crisis, David is taking up where I left off. “I know firsthand what it’s like to have a developmentally delayed child in the family,” he begins. “My first cousin was born with a range of developmental problems, and I’ve seen how much her parents have had to struggle to raise her, the suffering of that family.”

  I am afraid. Indeed, there is fresh movement around the room. Questions. About his cousin’s diagnosis. And what exactly constitutes parental suffering.

  “It sounds selfish, but a part of me is relieved,” David goes on, “that Silvan is as damaged as he is so that we can make this choice for him. Because if he was less damaged, of course we would take care of him. But I know what a toll that can take on a marriage, and on subsequent children, and on the whole community.”

  There is a nodding of heads. People seem to understand that Silvan is part of a larger community. What a relief this is. How much larger it makes Silvan himself that he is part of this larger family.

  Now David is done and it’s time for general questions.

  First, someone asks if we understand that no prognosis is a hundred percent certain.

  “Yes,” I say, “but this one is certain enough that I would not want to gamble for a miracle and have Silvan suffer more because of it.”

  Dr. Z sits forward then and I stiffen. Will he say that we have to be more certain? Will he say that we always have to gamble on the side of life? After all, this is what some Christians say, as if staying alive is the greatest good, as if the longer we stay alive, the more likely we are to get to heaven. Instead, he says, “Do you have the support of your whole family in this decision?” For once, he is not using medical language. For once, he is not disagreeing. For once, he seems interested in us. Still I’m suspicious. Perhaps he thinks I’ll be defensive and say, “Of course everyone agrees with us,” and then he will know I’ve closed down real conversation. How wrong he is. I think of my father, home with hospice, trying to sit through a family dinner with a neck brace on because he hardly had the strength to chew let alone to keep his head upright. Food kept running down his chin onto the cream-colored foam, until at last he turned to a friend of mine who was trying not to gawk at the pathetic scene, and teased her, “If you ever want to write about this, check with Monica first. I’m giving her the story.” After dinner, he gave me a stamp, “To start mailing out your writing,” he said. I think of my mother who married such a man, a man so honestly funny and kind even in his dying. How much I love her for marrying him. For her own honesty and generosity. Her tolerance of ambiguity. Her support. I look at Dr. Z triumphantly. “Not everyone in our family would necessarily make this choice for their own child, but they all support us.”

  Sister C weighs in then, as if to counterbalance Dr. Z. “Any decision born of love is the right decision,” she says.

  It is a lovely sentiment, though I doubt it’s always true. But no one scoffs at her because love, I suppose, is part of what we’re doing here. This committee is listening to the quality of our love, making sure that they recognize it as love, and that our actions are consistent with that love. This committee is not just about science and facts.

  The mother whose child died tells us we are brave and unusual for coming here with this argument on behalf of our child.

  Nurse Kerry agrees. “I’m learning a lot from you,” she says, “from watching you love Silvan.” She likes the boom box we’ve brought in for Silvan. She turns on music so she can dance with him around his room
.

  Then the ethicist asks if we are clear that euthanasia is illegal. What we are doing is not euthanasia. What we are doing is stopping a treatment that is futile – in this case, feeding – because feeding will not change the grimness of his prognosis, it will not keep him from dying of his condition.

  “Yes,” we say.

  He reminds us that morphine does not hasten death – it only palliates a death that is already coming.

  Yes, we say, we understand.

  We understand and yet we don’t. We know Silvan has been trying to die since birth, through seizures, through forgetting to breathe. We know he should be allowed to die again. And yet, how is it that not feeding him is more compassionate than euthanasia? Why can we withdraw his food but not let him die in other ways? Later I will learn that this ethicist is a Catholic priest. Later, I will learn that the Catholic Church has been at the forefront of this issue for hundreds of years, providing much of our legal understanding of the balance between preserving life at all cost and considering the quality of that life. For the church, biological life is considered a “good,” but not the highest good. According to the church, we are sacred not just for having bodies, but for having a relationship to those around us. Later, I will learn how our own advances in medicine have created a field of medical ethics out of what used to be a purely religious debate. I will also learn first-hand how ethicists may be able to navigate issues in the abstract while never living with the consequences, ethicists who might actually be made “queasy,” as one put it, by the details resulting from allowing Silvan to die while agreeing that it was a moral act. I think Silvan should be allowed to die, but is this a good death? On this day, we are too overwhelmed for such probing. On this day, we’re only looking for agreement on a decision that feels right for our son.