A Life Beyond Reason

by Chris Gabbard

  “The newborn,” Dr. Martin continued, “sustained a brain injury consistent with asphyxia.” As he spoke, his elbows rested on the top of the conference table. His hands alternated between clasping (as though praying), forming a steeple, and spreading out with palms up (as if checking for raindrops). He laid out the case that the infant had suffered a significant injury to his gray matter and the zone between the gray and the white matter. Elaborating, he used the phrases “watershed injury” and “dead zones.” My mind stretched to the areas in the Gulf of Mexico that were said to be dead zones, where no sea life remained.

  “Overall,” he said, “his MRI showed diffuse injury throughout the cortex. The baby also experienced damage to the deeper brain structures such as the basal ganglia and thalamus.”

  “His cerebellum was undamaged,” Dr. Thomson pitched in. He was a physician we had never seen before. I remember thinking that cerebellum sounded like antebellum. Was this supposed to be grounds for optimism? Ilene asked what all of this meant for the long term.

  Dr. Martin answered: “Most likely the child will have developmental delays, potentially serious ones.” Not everyone around the table was in agreement, however. Dr. Anderson predicted that probably, eventually, the boy would meet his milestones. Anderson was another physician we had not met.

  “You believe he will meet his milestones?” Ilene asked, hungry for encouragement.

  “Yes,” Dr. Anderson said, nodding, “I do. I believe he will.” The other three doctors shifted uneasily in their chairs. It seemed to me that they didn’t agree, especially Dr. Martin, who cocked his head skeptically.

  “How did this happen?” I blurted out, changing the subject. “Why did our baby come out this way?”

  They seemed taken aback. Was I being impertinent? Dr. Thomson and Dr. Lewis exchanged a quick glance. It appeared that neither was going to touch the question. They were leaving it to Dr. Martin, who finally cleared his throat and said, “Things can happen in a pregnancy and labor.”

  “What kinds of things?” I said.

  Dr. Martin was choosing his words carefully before saying, “A lot of hypotheses have been put forth.”

  “What are some of these hypotheses?” I said.

  Again there was silence. Finally Dr. Martin said, “No one can say what happened.”

  “No one can say,” I responded, “because you haven’t found the answer? Or because you’re not permitted to say?”

  Dr. Lewis and Dr. Thomson again looked at each other. Dr. Martin said, “We don’t know.”

  “Then when will you know?” I said.

  “That’s impossible to say,” he said.

  The four doctors and I were speaking at cross-purposes. I felt like a linguist trying to decipher the mysterious language of the heptapods. The gist of what they were saying was that what had occurred was an act of God, that these things simply happen. But I was suspicious of this explanation, seeing it as an evasion, and the exchange grew testy. After a little more back and forth, my voice rose: “Something is wrong here!”

  “Whoa! Whoa! Whoa!” Dr. Martin shot back, holding up his hand and signaling for me to stop. “There was nothing that went amiss during the labor and delivery.”

  “I’m not talking about the labor and delivery, damn it!” I said. “I’m talking about the days leading up—” I was aware that I was attacking the wrong people. These physicians in front of us weren’t to blame. Our beef really was with the doctors of the OB-GYN practice. They were the ones who had overseen Ilene’s prenatal care right up to the moment we arrived at the hospital on March 3. Ilene, who knew that I could be a hothead, put her hand firmly on my wrist, signaling for me to be quiet. She would take over.

  Following up, she asked about the two poor test results prior to induction but following the baby’s due date of February 20. These were the ones conducted on Monday, February 22, and Monday, March 1, before she arrived at the hospital for induction on March 3.

  Dr. Martin said that the two tests didn’t indicate anything particularly worrisome.

  “That sort of thing happens all the time,” Dr. Thomson said, backing him up.

  Ilene then asked about the poor test result of March 1 and the decision to postpone inducing labor until March 3.

  Dr. Martin fielded the question: “Proceeding sooner wouldn’t have made any difference.”

  “But if the baby was experiencing distress that early, as early as February 22nd and then a week later, on March 1st,” she persisted, “and he was already eleven days overdue on March 3rd, he wouldn’t have had the stamina to endure an excessively long labor and delivery.”

  “The labor wasn’t excessively long,” said Dr. Martin.

  Ilene gasped. “Forty-two hours wasn’t excessively long?” she asked.

  But before she had a chance to continue her line of questioning, all four doctors began redirecting us toward focusing on the future. Now came a barrage of happy talk. There was a legitimate basis for it: recent research was showing the neuroplasticity of the brain and its capacity for adaptation to change, including structural reorganization following injury. This was a newer model, the older one having assumed that brain cells die due to injury, and then permanent loss of function follows. The new model gave grounds for anticipating improvement.

  “Babies’ brains are plastic,” said Dr. Anderson, the one who had given us hope, saying that August might meet his milestones.

  “Plastic?” I asked. I remembered a line from the movie The Graduate: “Ben, I want to say one word to you. Just one word: Plastics.”

  “Yes, plastic,” Dr. Anderson said. “It’s amazing what recovery can occur.”

  “Especially starting so young,” Dr. Thomson said.

  Ms. Cooper, the social worker, chimed in, “Getting him started with physical and occupational therapy is crucial. I will get you a referral for the Golden Gate Regional Center’s Early Intervention Program.” Because of August’s extremely serious condition, she went on to say, he would qualify immediately for the Medi-Cal waiver, known in other states as the Medicaid waiver.

  On some invisible signal, the meeting started winding down. Dr. Martin leaned back and cradled his neck with his hands so that his elbows fanned up like wings. Looking like a bird in flight, he asked, “What are your plans?” A smile appeared on his face. It was the smile of reason.

  “Our plans?” I thought about the future for a moment. It seemed that we didn’t have a future. I felt like a man on a scaffold with the noose around his neck and the executioner asking, “What are your plans?” Maybe he was really asking, “Are you planning to sue?”

  Finally I answered, “We plan to learn how to give our baby phenobarbital.”

  As if simultaneously hearing the same cue, they all rose. The meeting was over. It had lasted forty-five minutes.

  Ilene and I never saw or heard from these five individuals again, save for Ms. Cooper, who secured the referral she had promised. Otherwise, this meeting was the last official contact we would have with the hospital regarding the birth, with two exceptions. One would be Ilene’s postnatal visit with Dr. Latchesik roughly five weeks later. The other was the hospital’s patient satisfaction survey.

  It has been said that having a child with severe impairments is like becoming a member of a club you never wanted to join. Addressing this unwished-for membership is Emily Perl Kingsley, a writer for Sesame Street, who in 1987 published a short essay titled “Welcome to Holland.” Before leaving Loma Prieta with our significantly impaired newborn, a hospital social worker handed Ilene a copy. Kingsley writes, “‘Holland?!?’ you say. ‘What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.’” Kingsley likens having a disabled child to arriving in the Netherlands when you thought you were going to visit Rome. “Welcome to Holland” has become a euphemism for arriving in a place you would never want to go to but then making the best of it. Kingsley’s piece stresses the point that if you spend your ti
me grieving over not being in Italy, you will miss what the Dutch have to offer. But the euphemism is based on an analogy that doesn’t make sense. Ilene and I would have loved to be diverted to a place with windmills, tulips, canals, cycling paths, and marijuana parlors.

  A medical rescue team had resuscitated our son on the brink of death. Now we were living with Lazarus. Diagnoses and labels for chronic and disabling conditions became the small smooth stones on a string of worry beads: cerebral palsy, spastic quadriplegia, profound mental retardation, cortical visual impairment, microcephaly, seizure disorder, osteopenia—and the list went on.

  Despite all this, we loved our child very much, as most parents would. But we also found ourselves in the unenviable predicament of mourning the loss of what we thought would be in the future—a “normal” boy growing into manhood. We felt intense shock, guilt, grief, depression, and anger. We didn’t progress from one of these feelings to the next as with Elisabeth Kübler-Ross’s stages of grief. Rather, like the horses of a carousel, these emotions kept going around and around.

  Several people asked me if we were going to put August into an institution, which was once the usual practice. Ilene and I heard about another San Francisco couple with a similar baby who did this very thing, so we knew that institutionalization was an option. Still, in 1999 it wasn’t common to commit severely impaired newborns to state institutions. This was what would have been done “back in the day,” when poorly paid and overworked attendants would have treated him as something to be fed, washed, and put away again. The thought of August lying alone and abandoned in such a place would have been more than I could have borne.

  On the other hand, we didn’t know what we were getting into when we brought him home from Loma Prieta. All we knew when we returned to our apartment was that we had a schedule for administering anti-seizure medication. As if nothing had gone wrong, we sent out a chirpy birth announcement:

  Welcome • Bienvenue • Welkom • Haba • Bienvenido • Willkommen • Benvenuto • Salve

  August David Chazan-Gabbard

  Born March 5, 1999

  6 lbs. 2 oz., 21 inches

  Even before the snail mail notice arrived, many friends and relatives visited us in our cramped apartment. They came to hold the new baby and tell us how beautiful he was. But the gravity of the situation was not lost on them. They acknowledged this with their words, eyes, hugs, and support. We had officially named him August David, but almost instantaneously this name was supplanted by medical terminology, which attached to him and subsequently defined him.

  “Welcome to Holland” doesn’t take into account the psychological toll. “We differ from ourselves,” writes Samuel Johnson, “just as we differ from each other.” Ilene and I now differed from what we once had been. Darkness descended, as though the moon had permanently locked into place in front of the sun, the start of a long eclipse. We grieved over losing what we had thought parenthood would bring. Ilene carried the burden of suspecting that she was responsible for what had come to pass. Because she had monitored her pregnancy closely and followed the expert advice, and because she had worked in hospitals, she felt that she should have caught the danger signs early. In the months following August’s birth, a Mother Goose nursery rhyme kept going through her mind like an unwanted ear-candy jingle:

  Humpty Dumpty sat on a wall

  Humpty Dumpty had a great fall;

  All the king’s horses and all the king’s men

  Couldn’t put Humpty together again.

  The story of this anthropomorphic egg captured the gist of what had taken place. The dream of a happy, healthy child lay on the ground smashed to pieces

  In times past, the fault for August’s poor birth outcome would have been attributed to the parents. In 1569 Pierre Boaistuau wrote, “These monstrous creatures [are the result] of the incontinence & sinne of the parents.” Vestiges of this assumption, what disability studies scholars refer to as the ancient symbolic model, linger into the present day. In a parallel vein, Ilene continually interrogated herself: Was there something she should have done or ought to have done differently? As she mulled over the personal “what ifs,” there was another, far more existential one, an awakening to an atavistic struggle for survival. This circumstance becomes startlingly grotesque when the parties involved are a mother and her baby, but before modern medicine, nature frequently pitted these two against each other. Mary Powell, the wife of the seventeenth-century poet John Milton, died three days after giving birth to their daughter, Deborah, due to complications. Back then infection, hemorrhage, blood clots, preeclampsia, and obstructed birth were common causes of the mother’s death in childbirth. Sometimes both sides lost. Katherine Woodcock, whom Milton married four years after Mary’s death, died less than four months after giving birth, probably also from complications associated with the delivery. The baby died too. Such events must have been frequent. A late-fifteenth-century marble funerary relief by Andrea del Verrocchio, in the Bargello Museum in Florence, depicts two scenes. On the right is a woman dying during the process of childbirth, surrounded by grieving female attendants. On the left the midwife gives the deceased baby to the father in the presence of onlookers. The Bargello Relief, in the words of Elaine Hoysted, who writes the blog Renaissance Mothers, presents “one of the most harrowing and realistic depictions of the realities of childbirth in art.”

  Before August’s entry into the world, Ilene never dwelled on the subject of childbirth in such gruesome terms. But afterward, having viscerally experienced it herself, she awoke to the spectral presence of death that always lurks in the background of the birth process. In addition to the “what ifs” of how she had conducted her pregnancy, in this realm she also mentally played a macabre game of mother-and-baby Russian roulette, imagining various birth scenarios, each new one more appalling than the preceding one.

  Because Ilene construed events in this particular way, she suffered a version of survivor’s guilt. Why had she come out okay while her son had lost nearly everything? A person could have questioned her as to whether this line of thought was reasonable and productive. What good was thinking in this way going to accomplish? Probably she was clinically depressed. When bad things happen, people have to process the event in whatever ways they can. In this new dark world into which she had been unwillingly thrust, productivity and reason had become merely elaborate ways to dodge the actual issue, which was her earnest desire: “My little child, please come home.”

  In late April, roughly six weeks following August’s birth, Ilene went to one of her regular postpartum checks with the physicians in her OB-GYN practice. Assignments rotated through the all-female practice to handle patient visits, so Ilene hardly ever saw the same clinician twice. On this occasion, however, she met with Dr. Latchesik, the physician who had supervised the delivery. As noted, she was a perinatologist, a doctor trained in the subspecialty of obstetrics concerned with the care of the fetus and high-risk or complicated pregnancies. Such a doctor is supposed to be highly skilled in prenatal diagnosis.

  It was the first time Ilene had seen Dr. Latchesik since the morning of the birth. During the visit, Ilene asked about her prospects for having healthy children in the future, and the doctor indicated that she should have no problem. The likelihood of going through such a calamitous birth experience a second time was extremely slim.

  “It would be incredibly bad luck,” said Dr. Latchesik, “for that to happen again.”

  Bad luck. So the catastrophic birth was attributable to bad luck. This indeed was helpful because it was accurate. Who could deny that what had happened was bad luck? However, as a woman of science, Ilene didn’t find this explanation satisfying. Dr. Latchesik might as well have announced that our boy was a lusus naturae—a freak of nature.

  August was so small, just a peanut, our “little bug,” and so it was hard for us to imagine that he wouldn’t always remain easy to care for. But we weren’t facing facts. We didn’t want to sue the hospital because we believed
that only greedy, litigious people did that sort of thing. Having grown up in a family earning its living through a small business, I inherited the prejudices of that class, one of which is a deep-seated animosity toward lawyers. My buddy Steve reinforced this sentiment when he said one day, “You’re not going to sue the hospital, are you?” But my dissertation advisor at Stanford, John Bender, told me to seek counsel. And he was far from alone.

  A Bay Area group, Support for Families of Children with Disabilities, assigned Ilene to a mentor, Betty Lituanio, and Betty laid it on the line in the strongest possible terms, recommending to Ilene that we needed to take legal action now, not for ourselves but for August. He would require a great deal of financial support just to survive. The cost of his care over his lifetime, depending on how long he lived, easily could run into the millions of dollars. We needed to litigate on his behalf. He was the plaintiff, not us. If our son had been treated wrongly, it was his parents’ duty to seek justice.

  Friends and family members began advising us that we were heading into an extremely rough future. The expense of caring for August down the line would become exorbitant. There would be the need for medications, therapies, treatments, surgeries, wheelchair-accessible vans, and around-the-clock attendants. There would be the need for adaptive equipment such as a hospital bed for the home, a lift, and pricey assistive devices. There would be the need for home modifications such as the widening of doors and installing wheelchair ramps, both outside and inside the house. There would be the need to reconstruct a shower to accommodate a wheelchair user and the caregiver bathing him. There would be the need for a lifetime supply of diapers. Right now, they warned, he was small, cuddly, and relatively manageable. But in time he would grow, and his needs would overwhelm us.