Holding Silvan by Monica Wesolowska

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.
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    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…”
    â€œBut Dr. Z doesn’t agree with us,” we say.
    â€œYou don’t know that,” he says. “All you know is that he is not comfortable proceeding without this meeting.”
    â€œBut what does that mean ‘he is not comfortable’?”
    â€œYou 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.”
    â€œGreat,” 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.”
    â€œAnd 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