New Delhi: Sam, your newborn son, has been suffocating in your arms for the past 15 minutes. You’re as certain as you can be that he is going to die in the next 15.
He was born two days ago with “trisomy 18”, a disease that proved no obstacle to his cementing himself immediately and forevermore as the love of your life. Your wife has already composed his own lullaby, “Sam, Sam, the Little Man.”
But she and you and your three other children have spent the past 24 hours learning about the incredible uphill battle Sam faces.
“Trisomy” means “three chromosomes”. Each cell in your son’s body should have a healthy pair of the chromosomes scientists call No. 18. The unkind twists of the genetic lottery have given him instead a crippling threesome.
Sam was born breech in an emergency procedure in Mary Greeley Hospital, in Ames, Iowa. You and your wife accepted the attending physician’s advice to Life Flight him immediately in a helicopter to the Infant Intensive Care Unit at the Iowa City Hospitals.
You were told that Sam could not breathe on his own, although no one ever asked whether you approved his being hooked up to a ventilator. You overheard the emergency personnel relaying in medicalese the reasons for the flight to Iowa City: microcephaly, low-set ears, flat midface, short stature, proximally placed thumb and potentially abnormal male genitalia. All signs, you have since learned, of genetic abnormality, and indicators that he will be, as a friend puts it — choking on the words — “mentally retarded”.
Not all people with trisomy 18 have problems. The literature reports a dozen cases of individuals living for 10 years, and S.O.F.T., a trisomy 18 support group, lists even more living into their 20s and 30s. Those with the conditions known as mosaicism and translocation of the 18 chromosome may live relatively long and happy lives, bring joy to their parents, siblings and friends, and be relatively free of adverse symptoms. But there is a wide range of disorders associated with trisomy, and for those with Sam’s symptoms, life expectancy is brutally short.
Sam’s case is classified as one of the worst. His brain cannot regulate his lungs. He grew successfully in your wife’s body and came to term because her blood provided him with oxygen. Now that his mother can no longer breathe for him, there is, the genetic counselor gently tells you, little chance that he will ever breathe on his own.
Some 1,100 infants are born annually in this country with trisomy 18. Many of them die of heart failure or apnea, irregular breathing that stops temporarily. Sam cannot breathe on his own at all. In an era of less technologically sophisticated medicine, your wife suggests, Sam would have died at birth?
Yes. Even with today’s respirators, cardiac support equipment and antibiotics, nearly 30 percent will die in the first month; 90 percent will die before their first birthday. Of those who survive, most will have radical cognitive limitations, a condition the most recent revision of the Diagnostic and Statistical Manual of Mental Disorders refers to as “profound intellectual disability.”
How do you know?
You pose the question to Sam’s geneticist, a kindly man in his mid-40s. He measures his response. He has an M.D. and a Ph.D., and has worked with trisomy infants for 15 years. You like him. You hear in his voice the ring of years of medical practice, scientific research and practical wisdom. You see in his eyes the face of a father. Well, he says, as to the diagnosis of the genetic problem, the results of chromosome analysis are accurate 99.9 percent of the time. As for the prognosis? Unfortunately, Sam seems to have a version of trisomy 18 that makes it impossible for his brain to successfully stimulate and coordinate the activities of the respiratory tract.
Are you sure? What would happen if you removed that air hose taped to his face? Have you tried it? Yes, once, for a few seconds. His lungs showed no signs of beginning to operate on their own. It would be inhumane to experiment on him by leaving the tube out for any longer period of time. He cannot breathe.
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.
Thirty minutes. There are no visible signs of life. You rock his limp body as tears fall on the blue blanket. You wonder what sort of beast you are. Forty-five minutes. Grandma looks in, ashen faced, seeing in a glance that it is over. Shortly your wife appears. She immediately takes her son’s body in her arms and coddles him. She sits there with him for three hours.
You should not have let your baby die. You should have killed him.
This thought occurs to you years later, thinking about the gruesome struggle of his last 20 minutes. You are not sure whether it makes sense to talk about his life, because he never seemed to have the things that make a life: thoughts, wants, desires, interests, memories, a future. But supposing that he had thoughts, his strongest thought during those last minutes certainly appeared to be: “This hurts. Can’t someone help it stop?” He didn’t know your name, but if he had, he would have said: “Daddy? Please. Now.”
It seems the medical community has few options to offer parents of newborns likely to die. We can leave our babies on respirators and hope for the best. Or remove the hose and watch the child die a tortured death. Shouldn’t we have another choice? Shouldn’t we be allowed the swift humane option afforded the owners of dogs, a lethal dose of a painkiller?
For years you repress the thought. Then, early one morning, remembering again those last minutes, you realize that the repugnant has become reasonable. The unthinkable has become the right, the good. Painlessly. Quickly. With the assistance of a trained physician.
You should have killed your baby.