But couldn’t that change? Yes. Some trisomy 18 babies in Sam’s condition eventually improve to the point at which they no longer need the respirator. Some leave the hospital and begin to respond to their parents’ affection. But a majority never leave the hospital, never respond to the presence of others and die while still connected to the respirator.

What are the choices? Some parents choose to use all possible means of continuing their child’s life in the hope that their child will beat the odds and eventually overcome problems. Others choose to let the children die to spare the babies the pain of the ordeal.

Forget the statistics and what others do or don’t do. We would like to know what our Sam’s chances are for reaching the point where his life is valuable to him. But there is no answer to that question. No one can tell you whether your son’s life is worth living from his perspective, or yours. We cannot say whether your son will ever breathe on his own or look at you. We can say only that the literature suggests the odds are stacked heavily against him.

You and your wife had no warning during the pregnancy that the child might be genetically abnormal. You were offered the services of amniocentesis, a test that may have revealed his condition. You and your wife refused to have genetic testing done on the fetus because your wife opposes abortion on theological and moral grounds. Knowing ahead of time that the child was genetically abnormal would not have provided any useful information. Genetic testing is done to allow parents the choice to abort fetuses with severe problems. But your wife would never abort her baby, so there was no point in having the tests performed.

The two of you have support in deciding to let your baby die: your wife’s best friend from church, her mother and sister from 2,000 miles away, your own mother and father, your two brothers and sister, and every member of their families, gathered from 300 miles away. They help you think through the decision to remove the air tube. They squirm with you, hesitating to give their opinions. In the end, they express support for your decision. Your brother calls it “courageous.”

There seems to you both a difference between killing your baby and letting him die. You are letting Sam die. Your father gathers the family, nearly 20 adults and children, in the room. You hold hands, collectively sing a psalm, weep through Grandpa’s prayer. Everyone leaves. Your wife tries to sing Sam’s lullaby to him, one last time, goodbye, Sam, but her voice fails her. She hands him to you. She cannot bear to go through it. Your brother and mother have offered to sit with you, but you decide it is something you must do alone. Just you and Sam.

The nurse comes in, mute. You look at him, sleeping. He seems at peace. You nod your head. She gently pulls the tube. It slides out quickly, as though he were helping to expel it. Without his lifeline, he does not move. A minute later, his eyes open. It is the first time you have seen them. His head jerks slightly forward. He does not cry. He gasps silently for breath. His eyes close. You almost yell for the nurse, to beg her to put it back in. To keep from doing so, you pray, arguing with God that letting him die is best for him. After five minutes, his face pales, then turns a sickly purple. His tiny chest convulses irregularly in an unsuccessful attempt to draw air into the lungs. After 20 minutes, he lies still. His fingers turn gray.