Family’s Painful Choice Over Brain-Damaged Infant

On Feb. 6, a baby boy was born, six weeks premature, at Sibley Hospital in Washington. His mother had been hospitalized during her pregnancy twice before--once for dehydration and again for very early labor--and the delivering obstetrician was on the lookout for more trouble. He got it. The baby didn’t breathe properly and after a brief examination, he ordered him immediately transferred by ambulance to Georgetown Hospital’s high-tech Neonatal Intensive Care Unit. He needed the best of care.

That child was my grandson, my first grandchild, and the news of his birth and his problems came in the same phone call. The ambulance beat me to the hospital where Matthew (as he was soon to be named) was already laid out in an open isolette, wired to various monitoring machines. A tube had been inserted down his throat into his lungs, which were being oxygenated and pressurized by a winking, blinking, lifesaving respirator. “Such a rough debut,” I thought.

My eyes traveled up and down his tiny 4-pound, 11-ounce body, noting, correcting, wondering. Lots of dark hair, like my son, his father. Sweet, delicate features. Slightly misshapen, bruised head, probably labor-induced. And one foot badly skewed, blue-gray in color. I reached down and wiggled it gently. There wasn’t any muscle tone. Club foot. Probably correctable. But his eyes. What was going on there? They seemed dull, like the backside of a petal. No shine or light.

I looked around the intensive-care unit. Across the aisle was an infant weighing less than a pound, wrapped in tinfoil, like a baked potato. Another, much larger baby was strapped on his back on a tilted table that vibrated rapidly from the “jet” respirator that pumped up to 400 breaths a minute into his lungs. This was the infant “MASH” unit in the hospital. A lot was going on.

Hyaline Membrane Disease

Matthew had hyaline membrane disease, the same lung condition that President and Jacqueline Kennedy’s infant son, Patrick, died of in 1963, before this respirator was invented. But still, the doctors weren’t making any promises. Matthew had a rotten set of lungs, offset by his weight (which would help him) but he would have many peaks and valleys before, and if, he survived.

I vowed to visit him, with or without my son, every day even though there were printed rules on the walls about no visitors without parents in attendance. I would talk to him, sing songs, not get in anybody’s way, be a model grandmother even though I had not planned upon becoming one so soon.

The teen marriage that produced this baby was impulsive, ill-advised and, by the time Matthew was conceived, over, except legally. My now 20-year-old son lived with me. His still-legal wife had moved back in with her mother. Yet it was poignant and even a little amusing to listen to them shyly interact over Matthew’s crib.

Cupping his large hand gently over Matthew’s back, Christian said softly, “He likes that.”

“He’s not going to any public schools,” Sharon said.

“He’s gonna turn out spoiled. I’ll have to take him on a little road trip on my Harley when he’s 16 and tell him about the realities of life.”

“He’s not getting on any Harley,” she countered.

Listening to the two of them weave projections over the head of this fragile, gasping baby pierced my heart. Riding Harleys seemed lifetimes away when Matthew barely had the strength to curl his hand around my index finger.

Soundless Crying

Sometimes his mouth, uncomfortably obstructed with lifesaving tubes, grimaced and a tear would slide over the bridge of his nose. But he cried soundlessly, as if he were under water or far away without a sound track. His silent crying tore at me. A dozen questions teemed in my mind.

“He doesn’t move at all,” I remarked to a nurse who was suctioning out his mouth.

“It’s the paralyzing drug he’s on, so he won’t reject the respirator.” she explained. That made me feel a little better.

Then, after a week, they withdrew him from the drug. “He still doesn’t move much,” I said to Dr. K. N. Siva Subramanian, chief of neonatology whom I had instinctively liked from the moment I met him. A handsome, scholarly looking Indian with kind, steady eyes, he had almost relented over the visiting rules but drawn back, saying he couldn’t make any exceptions.

“I know, we’re concerned about that,” he said without changing his unconcerned expression. That remark was a concession in itself. The hospital rule was that no one could ask questions of the doctor unless the parents were present to hear the answer. I learned to patch information together from overheard nurses’ comments or random remarks from Sharon or Christian. Of course, the parents could ask any questions they wanted. But for various reasons, not the least of which was shyness, they rarely did.

On March 8, the hospital performed a CAT scan on Matthew’s brain. “The nurse said it was ‘bad,’ ” Sharon said. On March 10, Christian and Sharon were asked to a conference with the doctors to discuss the results. Sharon didn’t want either her mother or me to attend. She explained that she would feel like a baby. I admired Sharon for wanting to face up to bad news on her own. It was a step. But I drove Christian down to the hospital and waited while he and Sharon heard the news in another room. For the first time, I was allowed to hold Matthew--without a chaperon.

Searching around for songs to sing, I went through “Sleep My Child,” “America the Beautiful,” and finally found myself most at home with “Tantum Ergo,” an old and comforting Latin chant I had learned in high school. I sang and patted him and combed his hair with a fine-toothed scrub brush given to me by a nurse. He seemed calm in my arms. No tears.

Driving home, all attempts to find out what happened were met with stony silence. Christian was red-eyed and angry looking. But finally, he responded when I asked him if he wanted me to stay home with him.

“No, it’s no big thing.” Then the dam broke loose. “Matthew’s messed up, man. He’s got irreversible brain damage. Part of his skull is collapsing. I don’t understand the doctors. They talked about giving him a tracheotomy so he could breathe and then sending him home to die.”

I told him quietly that I didn’t think Matthew would live too long and that he should be allowed to go peacefully. Christian nodded. “That’s what I think, too, but Sharon doesn’t understand what’s going on.”

March 15. Another, more formal meeting with the chief of child neurology, Dr. Charles Kennedy, was demanded by Sharon’s mother, who could not get any coherent information out of Sharon. She had finally telephoned Dr. Kennedy and insisted that he meet with her so she could understand what was happening. This was the first meeting where both grandmothers could air their concerns. Father Robert Baumiller, chief of genetics, and Dr. Jennifer Newell, a resident physician on the ICU ward, were also there.

‘Not Going to Catch Up’

Dr. Kennedy began slowly, diplomatically. “Well, the CAT scan confirmed what we saw on a sonogram earlier.” (I jotted down phrases as they seemed important.) “Abnormal development. . . . The extent of damage is such that the baby is not going to catch up. . . . Learning potential is a little hard to estimate, but talking or going to school are only remote possibilities. . . . Wide-spread brain damage in every lobe. . . . A little slipping back of skull size as the skull tries to conform to the brain tissue, which appears to have become smaller.”

I interrupted, both to make sure I understood what he said and to make sure that Sharon, who could seize upon the word remote and take unrealistic hope from it, understood as well.

“Dr. Kennedy, are you saying that--barring a miracle--the chances of Matthew ever sitting up, walking, talking, speaking or thinking are very remote?”

Dr. Kennedy nodded. “Barring a miracle. Most babies,” he continued, “have a built-in maturation. But we can’t teach them these primitive natural skills.”

Like swallowing. Matthew did not know how to swallow. And because he lacked this “primitive natural skill” he continually collected saliva in his throat which, if he weren’t suctioned regularly, would choke him. A number of times so far, the nurses had tried to wean Matthew from the respirator now that his lungs were better, but he labored so long and hard to compensate that he was put back on it. In fact, as Dr. Newell pointed out, he was still on a drug that, in effect, reminded him to breath.

But . . . but . . . there was a surgical procedure that Dr. R. Dhanireddy, Matthew’s immediate care physician on the ward, strongly recommended, a tracheotomy and gastrointestinal tube. Although he would still have to be suctioned, Matthew would be able to breathe and be fed off the machines. Dr. Newell brought this up. “It would make him more comfortable,” she explained. And, conceivably, prolong his life.

On ‘Medic Alert’

At that moment I went on “medic alert.” Somehow, we had slid right by the fact that, tubes or not, we were dealing with a human being whose prospects were entirely dismal, from Matthew’s perspective. At age 1 or age 50, he would always be strapped to a chair, unable to think, chew, speak, swallow or even know that he was Matthew, a human being.

The only preparatory research I had done was theological. The night before, I had snatched an old Baltimore Catechism off the shelf in my living room and looked up the Catholic definition of soul . There it was, in the index. “The soul is an immortal spirit, endowed with intelligence and free will.” I brought this up.

“Matthew has neither, Dr. Kennedy. He will never be able, as a human being, to know with his intelligence, love with his will, or serve God.” (Again, I was speaking directly from the Baltimore Catechism, which defines the purpose of life as “to know, love and serve God.”)

“Why,” I continued, “should we doom him to the kind of life that this operation might make all too possible? Isn’t it better to let him go?”

Dr. Kennedy’s face tightened. Clearly, he wasn’t comfortable with this kind of wide-ranging discussion, beyond the “narrow margins,” as he called them, of his specialty.

Willing to Let Him Die

“Our trap,” he conceded, “is that we are trying to do our job in sustaining life. And we are also closely tied in to the legal system.” (At that time I was undereducated in the legal system. Later, I played catch-up ball.) At this moment, Father Baumiller commented “We’re willing to let the baby die, but not to choke or starve to death.”

Prior to this meeting, I had questioned a nurse friend of mine and asked her, if Matthew was allowed to die, whether he would experience any pain. She had replied that nobody could say, although given the extent of his brain damage he probably wouldn’t feel much of anything. If Matthew was taken off the respirator, he would be suctioned and fed at all times, and gradually lose consciousness. I could live with that, even imagined holding him while it happened, rocking him, in effect, to death.

Dr. Kennedy repeated that he didn’t think it was correct for him to comment on these matters, which added to my frustration. Who in the hospital was prepared to comment? He then added something about his “only responsibility” being to explain the clinical aspects of the situation.

“I don’t know of anybody in life,” I said, “who only has one responsibility.”

Dr. Kennedy flushed and dropped his professional veil briefly. “You don’t have to tell me about responsibility,” he barked. “I have experienced the same kind of torment in my own family.”

Dr. Kennedy regained his composure and asked to be released from the meeting, his job having been accomplished. The meeting continued. It was agreed that the hospital would have an Ethics Committee meeting before anything further was done for or to Matthew. Or that is what I thought we had agreed.

Fine Web of Rules

By the time Matthew’s CAT scan had been explained, he had been in the hospital for more than five weeks. I was more and more aware of the fine web of rules and attitudes that stretched across the entrance of the Neonatal ICU. I could almost feel the strands brushing against my face as I walked through the door.

Not being able to visit Matthew by myself was a small rule. A large rule was not being permitted to speak to his doctors alone. And when, after Matthew had been in the hospital for several weeks, both Sharon’s mother and I decided to get a “second opinion” outside the hospital, I bumped into another obstacle. At Georgetown, there are no “seconds.” All the pediatric neurologists we called from other hospitals refused to come.

The reason given was “insurance.” Neonatologists, by virtue of their in-house specialty, are directly covered by the hospital with which they are affiliated. If we wanted a “second opinion,” Matthew would have to be transferred to the specialist’s hospital.

Hardest for me to bear was the unspoken attitudes of certain nurses and doctors on the unit who must have heard that I was lined up, along with Sharon’s mother and my son, on the side of letting Matthew die naturally, without an operation. The volume of icy stares, curt replies and silence turned up after the CAT scan meeting. Word must have gotten around.

Once, when watching Matthew try in vain to turn his head, I asked Dr. Newell if she could turn his head for him. From across the aisle, she gazed at me as if I had made an impolite request.

“I don’t think I’m very well-liked here,” I whispered to Sharon.

“That’s because you ask questions, and I don’t,” she replied.

A Warm and Cool Relationship

The dynamics of my relationship with Sharon blew warm and cool, with my sympathy for her terrible predicament laced with frustration over the secrecy in which she cloaked some of her thoughts and decisions. Daily, the bonding between herself and Matthew grew stronger and her incapacity to imagine life without him deeper. She would sit for hours every day, gazing mournfully at him like a broken toy that was too fragile to play with. The nurses understandably loved her. So many mothers never came to see their babies at all. Then, too, Matthew was her only remaining link to a marriage that had been too premature to survive. “It’s too hard to give up both at once,” she said. The very evening of the CAT scan meeting proved this out.

While visiting Matthew that Wednesday night, Sharon decided to give permission for Matthew to have the operation. At midnight, she called Christian to tell him that Matthew was scheduled for surgery at 7 a.m. Friday. Apparently, there would be no Ethics Committee meeting, now that Sharon had agreed to surgery. Christian’s attitude was one of contained rage and hopelessness. Emotionally, he was being stretched too far.

Horrified that Sharon had made such an abrupt decision about Matthew’s future, I went to bed that night knowing that I had 24 hours to try to halt the conveyor belt upon which he had been placed. Visions of an older, adolescent Matthew, strapped into a wheelchair, wearing a diaper, made it difficult to sleep. The first action I took the next morning turned out to be the only one needed.

Confronting my son, who was brushing his teeth in the bathroom at 7 a.m., I told him he needed to do something for Matthew--go down to the hospital with a statement saying he objected to the surgery. We would find out if fathers had any rights.

His first reaction was to hurl a few expletives at me. We had not been getting along. I disapproved of his hot and cold treatment of Sharon, his erratic visits to Matthew. He saw no reason to do me any favors.

“I’m not asking you to do this for me. I’m asking you to do this for Matthew. And if you don’t do it today, you won’t have another chance, ever.”

The toothbrush slowed down in his mouth. “All right,” he agreed.

It was 8 a.m. when we walked into the ICU nursery. Dr. Newell was standing by Matthew’s isolette making notations in his chart. Christian approached her and spoke about the coming operation. She nodded, smiled and said, “It will make him more comfortable.”

“But I disagree with it,” he said softly. Then, reaching slowly down into the pocket of his carpenter’s pants, he drew out the statement and said, “I’ve got something I want to sign saying I don’t agree with what’s going on.’

Dr. Newell’s eyes widened as he held the paper toward her. Backing away, she said, “I can’t take responsibility for accepting it. You’ll have to wait for Dr. Dhanireddy. He’ll be here by 10:30.”

Just then Dr. Mehta, the physician who had admitted Matthew on Feb. 6 walked through the door.

“Here,” I said, grabbing him by the arm. “Dr. Mehta admitted Matthew. He could witness it.”

Dr. Mehta took the statement, read it quickly and nodded. “Make sure,” he instructed Dr. Newell, “that Dr. Dhanireddy sees this as soon as he arrives. Tape it to the isolette.”

It was astonishing how quickly a piece of paper put the hospital into gear. By the time Christian and I had arrived home, the phone was ringing. Dr. Dhanireddy was on the line.

Having taken an action that seemed to produce results had pumped new confidence into Christian, who spoke with amazing evenness at his end. Despite the clear drift of Dr. Dhanireddy’s comments--as interpolated from Christian’s responses--he held firm.

Leave Him to Heaven?

“He’s not going to live a life, Dr. Dhanireddy. Matthew’s just a body living. I personally think we should have a meeting in which the real possibility of letting Matthew, uh, go up to heaven is discussed.” (Silence.) “But I can’t live with the fact that my son is going to live like that for the rest of his life.” (Silence.) “Well, we have a slight problem because I disagree with this surgery. I think a very highly structured meeting should take place where some very serious things are discussed.”

The conversation ended. Dr. Dhanireddy told Christian that he would try to arrange an Ethics Committee meeting, either that afternoon or the next morning. I breathed a sigh of relief. If and when surgery was ordered, it would be only after a consensus had been reached that it was better for Matthew. I could not imagine that this would happen. Matthew’s death had been properly arrested by technology. But now that we knew how severely damaged he was, I could not imagine anything crueler than deciding to prolong his life with more technology.

Matthew could not speak for himself. Yet it was difficult for me to believe that he would not ask to be released from his torment. In other words, to die. Finally, Matthew was to have his “day in court.”