The first time I walked through the neonatal-intensive-care unit three years ago, I felt like I was back in biology lab in junior high school--back with the frogs on every desk, the sickening smell of formaldehyde, the urge to vomit, and the desire to flee from something dark and cruel that passed for "science." Though I was 25 years older and a professional I found myself reeling with the old but familiar panic and nausea as I scanned this room packed full of tables and boxes. Not green, slimy, and reptilian, but human like me--only very, very tiny.
What made it so surreal was the complete absence of everything we associate with babies. Most of the infants were naked, without even a diaper, let along cute baby-shower outfits and blankets. Many of them had masks over their eyes or tape covering most of their faces. All had multitudes of wires and lines coming from various parts of their bodies. Some had strange and frightening anomalies, and several were paralyzed by a drug similar to curare, which gave them an uncanny resemblance to pithed frogs.
The room was full of bright lights and incredible noise. There were plenty of mysterious machines--complete with flashing lights, alarms, and numbers that I knew must mean something to someone. An amazing number of poeple stood in the room, all of them talking loudly or doing something to the babies that looked creepy. Frederick le Boyer would hate this place, I thought, and I did too.
I was there for a job interview. I'm a nurse and for the previous seven years had been working with drug addicts, alcoholics, and women with eating disorders. I was sick of listening all the time to people problems, and I was depressed that I could help so few of them. I needed a change. I decided I wanted patients who weren't going to talk to me. That eliminated everyone except deaf-mutes, people who'd had throat injuries or surgeries, catatonic schizophrenics, and babies. The first three groups didn't interest me, but I like the idea of babies. Even though babies cried, I remembered how easy it was to get them to stop. You feed them, pick them up, or change their diapers. You sing to them and kiss them. It's clear-cut--you can actually accomplish something. The baby is unhappy; you do something concrete. The baby is happy; you go home from work happy too. It isn't like forcing an anorexic woman to eat, only to discover later she'd hidden all the food in her sweatshirt. Or seeing the same drug addict come back again and again. Yeah, babies were just what I needed.
The trouble was, most of the creatures in the nursery didn't look or act like babies. In fact, fetuses was probably the correct term for many of them. The normal length of stay inside the womb is 40 weeks. In this unit, as in hospitals all over the U.S., we are now saving infants that have spent only 22 or 23 weeks inside the mother. Only a few years ago these babies were not considered viable, but every year, as the technology improves, younger and younger fetuses are being saved. I have ssen babies so young that their eyes are still fused shut, their skin so unformed that it comes off in your hands when you touch it. Some of these kids are so young that they could be abortions--and they look it.
I'm not sure why I took the job when I felt so much disgust and horror just walking through the place. Maybe it was the challenge or the desire to learn something completely new, maybe some sick fascination, maybe just that the hospital was so close to home. I don't know, but after three years in what turned out to be the most exciting job I've ever had, I felt morally compelled to leave. It was not an easy decision to make. While I have seen families go through terrible ordeals, I have also seen the unit perform miracles for other families. I have cried tears of joy, as well as tears of sorrow and frustration. I was continually impressed with the kindness and love of the people who work in the unit. But I have never stopped being horrifed by some of the things I did and saw there. And I continue to be challenged by the moral questions that the latest technology has forced us to confront. Namely --who gets saved, who decides, and what are the consequences for the baby, the family, and society?
The answer to the first question is easy--almost anything gets saved. "We'd resuscitate a Big Mac if we could," a resident once said with some sarcasm. There have been more times than I like to remember in the past three years when my fellow nurses and I would ask why a baby, who 15 years ago would have been a miscarriage or a stillborn, was resuscitated. I'm not talking about a preemie born a month or two, or even three, early. I'm talking about babies with no chance of living beyond a few months, or babies who will live only with severe handicaps. These babies are the mistakes of nature that in other times and places would have been left to die.
The reasons for this saving of almost any baby are twofold. The first has to do with the fact that we live in a litigious society. When things go wrong--even so-called acts of God--we want to find someone to blame, and we feel it is our right to get some money for our suffering. Doctors, rightly or wrongly, have been one of the groups hardest hit by this mentality, and "bad baby" cases have become a very big business. In this climate physicians have to be very, very careful--and may have even become somewhat paranoid. Who's to say that the parents of the baby they don't save today won't sue them several years down the road? In fact, when people in the hospital administration found out I was writing this article, I was phoned at home by a near-hysterical manager. One of her objections to the article was that a lawyer might read it, contact families of babies I mentioned, and talk them into suing.
It was into this highly charged environment that the Reagan administration decided to ride like the Lone Ranger--to stick up for alll those poor, handicapped, discriminated-against infants the doctors, nurses, hospital administrators, and even parents wanted to let die. Never mind that this same administration had in numerous instances tried to "deregulate" related areas of social concern. Never mind that Reagan had weakened regulations protecting the handicapped, while cutting funds for vital services for them. Never mind that many handicapped babies now spend years in the hospital at great expense because Reagan cut back the funds for home nursing care that would have allowed them to live at home with their families. Perhaps some of the families who can't afford to care for their severely handicapped babies should send them to the Reagan ranch and let Ron and Nancy take care of them.
The Reagan administration's involvement in an issue that was previously a private matter between the family and physician began with the Baby Doe episode in April 1982. Baby Doe was born with Down's Syndrome and esophageal atresia, a surgically correctable defect of the gastrointestinal tract. The parents, in conjunction with the doctor, decided not to operate. Reagan's attention was brought to the case, and the parents' decision was challenged in court. Meanwhile, the baby died of starvation. The administration invoked section 504 of the Rehabilitation Act of 1973, which states, "No otherwise qualified handicapped individual shall, solely by reason of his handicap, be denied the benefits of, or be subjected to discrimination under, any program or activity receiving federal financial assistance." (This was, of course, originally intended for cases of job discrimination.)
In the aftermath of the Reagan administration's intrusion into this "sanctity of life" arena, the U.S. Congress, the Supreme Court, and child-protective service agencies around the country have all gotten involved in trying to define the proper role of goverment in this area. The courts eventually turned around many of the Reagan administration's initiatives, but the continuing legal ambiguities have fostered a climate of further paranoia among health providers.
There is another, more emotional reason why we are now in the very big business of saving any baby we can. Americans have a difficult time with death. We are now prolonging life at the end of its cycle beyond the time many people would desire, and without considering the quality of that life. Perhaps it is a natural corollary to our materialistic philosophy and life-style, but we have come to think of life itself as the important thing, and we refuse to take a stand on the issue of what kind of life.
I find it very peculiar that we have become so adamant and emotional about saving the lives of babies when we live in a society where babies can't go into movie theaters, where whole apartment complexes don't allow children, where there is no free day care and little that is adequate and reasonably priced, and where child abuse is a major problem. Let's face it--we are not a society that particularly loves children, nor are we even tolerant of them.
The disparity between our technological genius and our moral and ethical imbecility is very frightening. We want to forget that we are, after all, animals with animal reactions. My first reaction to the neonatal-intensive-care unit was an animal response: gut revulsion. Animals, of course, abandon those of their litter that are not "right." And while usually not that extreme, people all over the world have practiced infanticide, mostly in situations where family size needed to be controlled in the face of famine or drought, or when defects in the child's body would have given it little or no chance of survival. We in the West have rejected the idea of infanticide as barbaric, of course, but isn't it sometimes equally barbaric to save every baby we can, no matter what its condition?
What was the point in resuscitating a baby born so early that had had severe asphyxia to his brain due to very immature lungs? This baby will never be able to function in any way close to normal. The situation was even more dismal because his family had several other children and could not, in any way, take care of such a handicapped child, and chances for adoption were nonexistent. The child is now in a state institution, and he will cost the state more than a million dollars to "save." Or what about the premature child who became deaf from the side effects of the drug we gave him to keep him alive, who became blind form the high percentage of oxygen he needed, and who on top of it all developed cerebral palsy. This child also ended up in an institution. And what of the parents of these children? How will they live with their guilt and sorrow? Will they ever try to have another child? How will this trauma affect the siblings?
I have dozens of stories like these. The tricky part is that at the beginning, when you choose to resuscitate, you can't know the outcome. There were numerous times when I took care of babies I thought were lost causes, and they not only survived, but survived with few or no problems and became a source of joy to their families. I remember one baby who was born with a rare anomaly in which all the sutures in the head closed in utero. The growing brain had nowhere to go but up through the open anterior fontanel. The infant was basically a conehead and was so horrible to look at that I had nightmares about her. I was horrified that this baby was kept alive. Yet a neuro-ultrasound showed that her brain was normal. After neurosurgery the baby looked almost normal, and in another week was sucking from a bottle and went home to happy and grateful parents. I was glad I hadn't been the one to decide that child's fate, because I would have made the wrong decision.
The babies I've most enjoyed taking care of were the first and only children of older mothers. With many women waiting longer and longer to get pregnant, we are seeing more and more first babies of women in their late 30s and early 40s. These women usually desperately want their babies. And it is a real joy to be involved in working with a committed family.
Rita (not her real name) was such a baby. Pam was 42 when Rita was born, and though she had raised a stepson who is now a teenager, Rita was her first baby. It wasn't likely she'd have another chance at motherhood if Rita didn't survive. Little Rita was a miracle baby. Pam and her husband had been trying for years to have a child, but had long given up hope when she got pregnant with Rita.
The first time I saw Rita, she was a couple of weeks old. I was taking care of the baby next to her, but I kept noticing Rita because she was about the wildest little preemie I'd ever seen. She was so tiny, I could have held her in my hand. She was bald and scrawny. And she was mad. I figured either she didn't want to be on this planet at all and was furious about it, or she was fighting like hell to stay here. The next night I signed up to be her primary nurse. That meant that every night I worked, I would be assigned to Rita until she either went home or died.
Rita also had a primary nurse on the day shift. We were like alternative mothers to her; in fact, during the following months we probably spent more time with her than her mother was able to. We thought about her when we weren't at work; we worried about the care she was getting from other nurses when we were off. We got to know all her little quirks and her likes and dislikes. We fought for her when we thought the doctors weren't following the right course of treatment. We both cried when she went home, but we have stayed in touch with her and have followed her progress.
Even though we were emotionally involved, however, we were nurses. It was our job; Rita was an interesting and challenging patient, but we got paid and went home to our own families. For her family the experience was an unbelievable ordeal. There was no respite from the worry and anxiety, and the expense was too overwhelming to even think about.
In Rita's case the ordeal was worth it, and I am proud and happy to have helped keep her alive. It was touch and go with her for a long time. She tried to die on us three times. Preemies often remind me of temperatmental machines. Sometimes they forget to breathe, and then their heart rate drops dangerously low and they turn blue. But if you give them a good shake, like a broken radio, everything starts working again. Not so with Rita. When she stopped breathing and her heart rate dropped, we usually had to do a full-code resuscitation. She was so small, you had to do chest compressions with one finger.
I recently received a photograph of Rita--she is now three years old, and though she is still a little small and developmentally delayed, she is perfectly normal, bright, and well loved. She seems to have gotten over her initial bad humor. She even has hair now.
After Rita went home I felt I needed a break from primary nursing. But being randomly assigned to different babies never seemed to work for me. Once I was assigned for two nights to a brain-dead baby who was being kept alive for his "spare parts." He was a full-term, perfectly formed baby, and physicially beautiful as well, but there was no one home. Basically all I did was keep the ventilator working properly in order to oxygenate his tissues and organs. When no other baby could be found who needed his heart, eyes, or kidneys, he was taken off the ventilator and allowed to "die." It was a noble idea, I guess, but for me, spending 16 hours oxygenating a dead baby was pretty depressing, and I couldn't help thinking that my skills could have been used more productively.
There was also a series of babies I was assigned to whose kidneys had shut down due to yeast infections. Because the babies couldn't urinate, they retained all their fluids and poisons and blew up three times their "dry" weight. The skin was stretched so tight that it started to split and ooze. They must have been in incredible pain, but for one reason or another they were not removed from the ventialtor and were kept in a state of living death. They all died eventually.
I decided that the only way I could continue to work in the unit was to pick a baby to nurse, one who had a hopeful prognosis, who had a family who wanted her or him, and who could benefit from loving and consistent care. The baby I ended up choosing was Andrew, who fulfilled all my requirements exept for the hopeful prognosis. He was only about three months premature, but the X-rays showed that he had a pair of lungs that were incompatible with life. Something about him touched my heart. He had a sweetness that attracted many among the staff. Unlike Rita, who fought so hard to survive, Andrew had a certain calmness, a mellowness. Also, he had parents who wanted him very much. His mother, Barbara, had previously delivered a premature baby who turned out well. His parents believe Andrew was going to make it. And despite what I knew from the X- rays, I did too.
I took care of Andrew for five and a half months. I grew very attached to him and to his family. His father, Steve, came in every night on my shift, despite the fact that he had more than a full-time job. He helped me weigh Andrew, helped turn him, and when Andrew got bigger, Steven fed him through the tube that went from his nose to his stomach. Barbara also came in every night and fully participated in the baby's care, even though finding child care for her two-year-old was difficult.
There were moments of breakthrough and great hope. One night I discovered that by holding Andrew against my chest, carefully arranging the ventilator tubing, the monitor lines, his IVs and feeding tubes, he could breath easier, and I could lower his oxygen content. We all felt great when he had his eye exam, which showed his vision was still good despite all the oxygen he'd had. And when he finally came off the ventilator, I allowed myself to believe that X-rays could be wrong.
He lasted only ten days off the ventilator. He was working so hard just to breathe that he was completely exhausted and couldn't even digest his food anymore. It was pitiful watching him breathe. His nostrils flared and he had to suck in his chest, practically to his backbone, to get in the oxygen he needed. Finally we put him back on the ventilator, but he was worn out, his resistance shot from the steroids we had given him to try to get him off the ventilator. He contracted infection after infection. He just couldn't recuperate, and when after several days his color was continually blue despite 100 percent oxygen, his parents, doctors, and nurses all decided it was time to let him go.
I took care of him on his last night. All night long, nurses, doctors came by to spend some time by his bedside and say good-bye. At five and a half months, he was the size of a normal newborn, and he had become very well loved on the unit. Once nurse bought him a gardenia to smell on his last night. I played all his favorite tapes. His corner of the nursery had long been decorated with photos, drawings, stuffed animals, and clothes we hoped he would someday wear.
For me, it was a night of agony. Not just becuase I was going to miss him or because I felt such sorrow for his parents, who had wanted him so much. What I mainly felt was remorse. In his short little life he'd had so much pain--and so much of that pain I had personally inflicted on him. I stuck him countless times for blood samples or new IVs. I had to wake him for procedures several times a night. I stuck tubes down his nose and mouth and gave him laxatives. Even removing tape was painful to his sensitive skin. I couldn't help asking myself what it was all about.
In any other country he would have died within a day of his birth. Now he was going to die anyway, but after months of torment. And we had always known, really, that he couldn't survive. I couldn't shake the thought that I was a baby torturer, not much better than the Nazi doctors who tested their sick ideas on people.
The next morning his parents came in, along with his other primary nurse. We bathed him and dressed him in one of the outfits he never got to wear. We removed all the lines and tubes except for one IV through which we could give him some morphine. Then I removed the ventilator tube from his mouth and gave him his death. His parents held him, an he died peacefully 20 minutes later. I left the unit a few months later.
I still work with babies. Occasionally, I go to a birth of a very premature or defective baby, but all I do is stabilize it. Then it gets sent to the neonatal-intensive-care unit. Although I'm no longer torturing babies, I know someone else is, and I choose to ignore this fact most of the time. I admit it's sometimes boring to go back to changing diapers and giving babies baths after the high-tech adrenaline rush of an intensive-care unit.
I think that as a society we have to ask some very serious questions. The technology we now have is fascinating and seductive--and is becomine more so. Just before I left the unit, they bought a new machine called an Extra Corporeal Membrane Oxygenator (ECMO) at a cost of more than a million dollars. Then they had to train the nurses and doctors to use it, which cost thousands and thousands more. Basically, what the machine does is remove all the baby's blood and oxygenate it outside of the body. It is used primarily in cases of pulmonary hypertension, when the baby's own lungs can't function properly. A baby usually stays on the machine a week to ten days, at a cost of around $10,000 per day--which includes only the cost of the machine itself. The year before my unit acquired its own ECMO machine, 13 babies were sent to other places that had one. Of those 13, one died and one came out of it with serious problems. The rest had excellent recoveries. I suppose those are very good statistics. I suppose the parents of those 11 babies are very grateful for the technology that gave their babies life. But I can't help but wonder whether the cost is worth it. If we had unlimited money to spend on health care, maybe I wouldn't be asking this question. However, the reality is that we live in a country that would rather have Stealth bombers than adequate health care, so we are forced to make decisions about what we spend our health-care money on.
Do we want an ECMO machine in every neonatal-intensive-care unit, or do we want to make health care available to every person already alive, or do we want more AIDS research, or do we want more wheelchair accessibility? It seems completely absurd to me to spend so many of our resources saving babies if we won't fund the care they need later in their lives.
I believe the following questions should be addressed before a baby or fetus is resuscitated:
Is the baby likely to survive?
What is the quality of life likely to be for the baby?
What are its likely deficits--including those created by the technology--such as blindness, deafness, chronic lung problems, colostomy or other eating and digestive problems?
What are the parents' wishes?
What kind of impact will resuscitating the baby have on the family, especially the other children?
What is the cost?
A further question, which is really something more to think and talk about than to make a decision on, is how are these surviving babies going to affect the gene pool and the future of the human race?
I understand that during the crisis of a high-risk delivery, there probably isn't time to go into these questions in any detail. But we, as a society, need to make a decision about the ethics of what is happening with birth in this country. And all prospective parents need to know what their options are concerning an abnormal birth. Because of the technology we've developed, we can't just blithely let things take their natural course. That innocence is gone forever.
Art accompanying story in printed newspaper (not available in this archive): illustration/Alexander Laurant.