Parents Face Agonizing Decision : Should Surgery Be Performed on Brain-Damaged Baby?

It was the largest and longest Ethics Committee meeting anybody present could recall attending. Beginning at 4:30 p.m., it did not adjourn until close to 8. Present were doctors, nurses, ethicists, students from the school of social work, the hospital lawyer, a member of the business staff--about 30 people. Also present was Dr. Agnes Schweitzer, who had been my own children’s pediatrician and was to have been Matthew’s. When the meeting ended, I called her up.

Precluded from telling me anything about the meeting itself, she did tell me that when my son, Christian, and his estranged wife, Sharon, were invited in for about 20 minutes to speak their minds, Christian’s testimony was “very strong. Everybody was astonished,” she reported. “He was crystal-clear.”

He spoke eloquently, she recounted, of a good friend who is paralyzed from the chest down but his life is good because his brain works. Christian added that he had just seen a documentary about a spastic boy in Ireland who had written a prize-winning book with a pointer attached to his head. His life had meaning too. But his son, Matthew, would only be doomed to living a life in a body that hurt him, if he had the operation.

“Did Sharon speak up?” I asked her.

“No, she was too intimidated,” she answered. But Christian had spoken for her, saying that he resented the doctors getting her hopes up about Matthew’s future when they knew there wasn’t one.

The end result of the meeting was a compromise. The hospital recommended performing the operation with one important caveat: a “Do Not Resuscitate” order would be attached (with the mother’s consent) so that if, after the operation, Matthew could not breathe without a respirator, he would not be put back on it. That was March 17.

Condition Deteriorates

On March 20, Matthew took a sudden downward turn. His heart was acting erratically, setting off the monitor alarm. Pneumonia was suspected. Dr. Siva, the chief of neonatalogy, called the parents and told them they needed to make a decision within the next several hours as to whether they wanted Matthew treated aggressively or not.

“You have to express an opinion, Sharon,” Christian said in my living room. “I’m not going into this by myself.” Sharon couldn’t find her voice. The two of them sat silently. Finally, Christian asked me to leave the room. I listened from upstairs.

“Sharon, you can’t just say ‘I don’t know!’ Now is the time.”

“Well,” she finally admitted, “I know that he’s going to die, and that even if he gets surgery, he’s still going to die, and so we might as well go ahead and let him die.”

“Is that what you really think?” Christian asked.

“I guess so,” she said.

“And you are prepared to go down to the hospital right now and look Dr. Siva in the eye and tell him that?”

“It’s what you want.”

“Sharon, it’s not what I want. Of course, I don’t want to see my son die. But he’s not happy, Sharon, he’s not happy.”

“I know.”

“All right then, let’s go.”

The phone rang as they were about to depart. It was Sharon’s mother. “Let the poor little thing go, Sharon,” she begged.

Baby Rallies

In this case, nature resisted the natural solution. By late afternoon, Matthew had rallied on his own. The alarm might even have been faulty monitors. But a new “No Code” order was attached to his medical chart. If, before the operation took place, Matthew failed again, extraordinary means would not be taken to keep him alive.

Thus, within a five-day period, Matthew’s fate had been decided, halted, re-decided and decided upon again. With no choice in the matter, the baby was hostage to competing interests, changing emotions and a 20-year-old mother who was intolerably burdened by a Solomonic choice. Sharon had directly asked Dr. Dhanireddy, Matthew’s immediate-care doctor on the ward, why he thought Matthew should have the operation. He delivered the same answer we had heard before. “It will make him more comfortable.” Sharon persisted. “Would you order this operation upon your own child in this same situation?” The doctor replied he did not know.

“It’s much easier,” Christian said, “for Dr. Dhanireddy to decide to make Matthew live than for me, his father, to decide to let him die.”

The operation itself was straight-forward. A tube, inserted directly into Matthew’s throat to the top of his lungs, would enable him to breathe without a respirator and be suctioned more efficiently for the saliva he didn’t know how to swallow. Another tube, inserted into the wall of his stomach, would enable him to be fed. Both tubes would bypass his throat, bypassing as well the question of why do the operation at all.

It was a question that Sharon and Christian were now too emotionally exhausted to ask anymore. Sharon wanted only to take Matthew home, along with his stuffed animals and Playskool mirror, under any conditions. The hospital had encouraged this desire, using phrases like “once you get him home,” which the operation would allow.

Admittedly, caring for Matthew would be a 24-hour job requiring a monitor, suctionning equipment and oxygen. Matthew could never be left alone for any length of time, or he might choke to death. Opinions varied as to whether this meant he would need to be suctioned every 15 minutes or every three hours. How does one anticipate a baby’s saliva production, or the amount of guilt Sharon would carry if the monitor failed to alert her and Matthew quietly died while she was answering the telephone in another room? Incapable of making any sounds, he could not alert her with a cry.

But Sharon, fueled by a fierce and unused mother instinct, thought that all things were possible and that she wouldn’t be able to live with herself if she didn’t at least try to care for Matthew by herself. Thus, when the doctors announced their “recommendation,” she had nodded in acquiescence.

As for Christian--weary with trying to defend Matthew’s right to die and protecting himself against his own feelings for a son whose existence stabbed him every time he visited--he too nodded, not with agreement but resignation. And when the verdict was relayed by telephone to me I was not surprised.

Hostile to Operation

Had, for instance, Sharon suddenly become hostile to the operation, Georgetown could have called Child Protective Services and gotten a court order removing Matthew from Sharon’s legal custody. That is how determined and frankly frightened the hospital seemed of taking any responsibility for Matthew dying beneath its roof. For if, unlike the babies that no amount of technology could keep alive, Matthew was allowed to die, ending his pointless suffering, the hospital stood to suffer a great deal. “The legal bind,” as Georgetown’s chief of child neurology called it, could bind hard.

Beginning in 1982, a rash of “Baby Doe” cases had occupied the nation’s headlines. The first, in Indiana, involved a Down Syndrome baby whose parents refused permission for the hospital to do an esophageal operation. The hospital filed suit. The parents won. The baby died.

In 1983, another “Baby Doe” case was brought in New York by a right-to-life lawyer who sued both the parents and the hospital for refusing to do surgery on another Down Syndrome baby. The parents also won this case, although they later had second thoughts and had the surgery performed; the baby lives.

The most chilling case, however, was a class-action suit filed in Oklahoma against a hospital by a number of parents whose babies had all had spina bifida and were chosen, according to a “quality of life” formula, to receive only “supportive care.” All of them died in a children’s shelter without receiving either antibiotics or sedatives. This suit is still on-going.

New Legislation

Meanwhile, responding to the “Baby Doe” death in Indiana, President Reagan instructed the Justice Department and the Department of Health and Human Services to use Sec. 504 of the 1973 Rehabilitation Act to prevent further discrimination against handicapped citizens within hospitals receiving Medicare and Medicaid.

Additionally, the Department of Health and Human Services issued a 1983 federal ruling directing that no handicapped infant with a co-existing, correctable condition should be denied medical treatment given to normal infants. Accompanying this rule was a requirement that all hospitals post notices upon their nursery walls giving toll-free “hot line” numbers. Anyone suspecting discrimination could call in anonymously.

I saw no such notices on Georgetown’s nursery walls. But the Child Abuse Act of 1984 rendered them moot. In this act, Congress specifically prohibited withholding of medically indicated treatment from handicapped infants, with certain careful exceptions. But the insulting existence of those old “hot line” notices and the spectre of being invaded by “Baby Doe Squads” of federal examiners lingers on.

I read the exceptions to withholding of medical treatment in the Child Abuse Act carefully:

The term (withholding of medically indicated treatment) . . . does not include the failure to provide treatment (other than appropriate nutrition, hydration or medication) to an infant when in the treating physician’s or physicians’ reasonable medical judgment, (A) the infant is chronically and irreversibly comatose; (B) the provision of such treatment would (i) merely prolong dying, (ii) not be effective in ameliorating or correcting all of the infant’s life-threatening conditions, or (iii) the provision of such treatment would be virtually futile in terms of the survival of the infant and the treatment itself under such circumstances would be inhumane.

None of the doctors attending Matthew had ever implied that he would begin to thrive. There is a phrase nurses use for infants like Matthew--”incompatible with life,” although Matthew’s situation was complicated by the fact that he continued to breathe--with the help of a respirator. And had the CAT scan not revealed that he had suffered (probably in-utero within the first month) massive brain damage, the question of whether Matthew would choose to continue living would not have come up.

Values Challenged

An adequate or even seriously impaired intelligence is still capable of giving and receiving love, of wanting to remain alive. But that “wanting” was wanting in Matthew, who hung between two worlds, silently challenging the value systems of both the “Quality of Life” and “Sanctity of Life” adherents. Meanwhile, the technology that saved Matthew remains more sophisticated than its users who, apart from the legal issues, have great difficulty dealing with death itself.

Reaching for an old Catholic ethics books, I re-read “The Principle of Double Effect,” which used to be taught in Catholic schools as the ultimate moral yardstick against which every human act, no matter how large or inconsequential, could be laid and judged. It states that an act is morally allowable, allowing for an evil effect, if: (1) the act is either good or indifferent in itself, (2) the good effect is not directly obtained by means of an evil effect, (3) the evil effect is not intended for itself but only permitted and (4) there is a proportionately grave reason for permitting the evil effect.

The “proportionately grave reason for permitting the evil effect,” Matthew’s operation, seemed to be missing. What would breathing without a respirator give to Matthew except an extended existence of internal-external helplessness?

Yet looking at Matthew from the hospital’s perspective, one could find “proportionately grave reasons” for viewing his prolonged life as “the evil effect” of an operation that would save Georgetown from a potentially huge malpractice suit. Today’s weeping parent could be tomorrow’s hard-eyed litigant. In fact, several times I had winced when overhearing Christian bluster “I’m going to be consulting some attorneys” when speaking to Dr. Dhanireddy before Matthew’s operation, or later when he argued a nurse into putting Matthew back on a monitor, by saying “If you don’t, I’ll take you to court.”

Thus, the legal pressure outside the nursery distorted the circle of care around Matthew into a triangle of mutually fearful interest groups. Matthew himself seemed without an advocate of his own. And so, even with the guidelines of the Child Abuse Act to support a more humane approach to Matthew, Georgetown opted for surgery. Yet it could be argued that operating upon Matthew was, in itself, an act of child abuse, that the best of care, in this instance, was too much.

March 29. 7:30 a.m.: The day of the operation. There was an easy matter-of-factness about the nurses, as they prepared Matthew to be transferred into a portable isolette for his trip to the operating room. They plugged in various cords, smoothed the sheets and finally picked up Matthew to put him in the traveling unit. The nurse who whipped him expertly out of his isolette and affectionately kissed him on the head might have been plucking a child from a swing. Then he was rolled down the hall and through the swinging doors. Sharon, her girlfriend Melanie and I kept watch.

Death in the Nursery

Death visited the nursery once during the three-hour wait. It was very quiet. A screen was folded around the isolette of an Hispanic baby whose teen-age mother held her baby, now free of all the machines that couldn’t save him, in her arms. “About suffering they were never wrong, the Old Masters,” Auden wrote, “how it takes place while someone else is eating or opening a window.” While the mother grieved behind a screen, business went forward with the scraping of a dustpan in the hall.

Sharon simply looked. She had witnessed many deaths as well as many more reclamations from death during the weeks she had been visiting Matthew. And finally, two days before his operation, she consented to visit the Hospital for Sick Children. A violent battle of wills between Sharon and her mother had set the stage.

Horrified that the hospital was encouraging her to take Matthew home after the operation, Sharon’s mother had finally called the hospital social worker to say that this would not be possible. Even if Sharon’s insurance, obtained when she worked briefly at a day-care center, would pay for a part-time nurse, the psychic and physical burden would be too large for her daughter to bear. “You’re setting her up to fail,” she exclaimed.

The Hospital for Sick Children, a transitional-care facility that aims to return as many children to their homes as possible, is a pleasant, low-slung complex, with peaked roofs and gables. Inside, the floors are waxed, the walls are immaculate, and there are no horrifying smells or sights to put off the visitor. We began our tour with Olga Byll, the media coordinator, with Ward B.

Here, in spotless cribs and clothing, were the most critically sick babies who lay sleeping or looking through the bars of their cribs. “Do not be misled,” said Byll, who knew all their names and histories by heart. “Any one of these children could crash at any time.”

Ward C’s children needed less intensive care. Then came Ward D. Larger, adolescent children, badly brain-damaged, were strapped into wheelchairs, their heads supported by sponge rubber brackets. Others lay in bed, curled up, motionless. One comatose girl was the victim of a drowning accident. White against the white sheets, she looked eerily as if she was still floating just beneath the surface of the water that almost claimed her.

Mother’s Remorse

“I didn’t really understand what it would be like for Matthew before I came here,” said Sharon as we drove home. “It’s selfish to let him live. I’ve been the most selfish of all.” Her remorse was too sharp for me to allow.

I told her that such “selfishness” was entirely natural. How many mothers are ever put in the position of deciding upon their baby’s life? She shouldn’t beat herself up. I didn’t add what I additionally thought--that I wished the burden she carried could have been shared by everybody who individually cared about or for Matthew, that we could have come together, spoken about the hard truths, and then allowed Matthew to go while we grieved together for his life and our loss. It was not to be.

Matthews’ operation was, for want of a better word, successful. Now breathing independently through a trachea tube, he has been moved to Holy Cross Hospital. At three-and-a-half months, he has developed the ability to track with his eyes. His swallow reflex seems to be developing although it is not clear whether he could cope with food or the large quantities of mucus he produces. His head now remains erect when he is held. Any improvement is encouraging but his doctors are not prepared to project ahead. It is too early to conclude that Matthew has reached the limits of his development.

Meanwhile, he lies wedged up by a blanket, on his side in a crib. He opens and shuts his eyes, or rolls them upward, with the resignation of an old, tired Buddha. Sometimes he cries. Soundlessly because of the trachea tube. But you can tell by the tears.

“Man has places in his heart,” Leon Bloy wrote, “which do not yet exist, and into them enters suffering, in order that they may have existence.” These are the words that Graham Greene chose to preface his novel, “The End of the Affair.” The end of the affair for Matthew is not quite in sight.

He will either be transferred to the Hospital for Sick Children or, more probably, sent home to be cared for by Sharon. I will visit him, hold him, sing him songs and sometimes--in the middle of a movie that makes me laugh--I will feel suddenly ashamed. The price paid by Matthew for my expanded heart is too high.