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The Story of Matt : When Matthew Chen was born prematurely five years ago, he was frail, barely alive and could have easily fit on these pages (photo at right is life-size). Today, he is a living testament to the high-tech skills of neonatology.

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<i> Edwin Chen is a Times assistant metropolitan editor. </i>

He emerged from the womb gasping for air, his cry so weak it was inaudible. His frail body was pink, but his hands and feet were blue. His skin had the texture of parchment and was covered with downy hair that normally is shed during the final weeks of pregnancy. He weighed two pounds and measured just under 15 inches, not much more than the weight and length of a small loaf of bread.

Matthew Chen was nothing more than a bony, 30-week fetus--”a skinned chicken,” as one hospital staffer later put it. His appearance evoked the searing image of starving children everywhere. Only the distended belly was missing. Immediately, Matt was placed in an incubator, an oxygen mask over his face. And even as he was being wheeled toward the intensive care unit, medical specialists already had begun their rescue attempt, wielding what seemed like countless needles and tubes.

That was the vulnerable human being who made Meredith and me parents more than five years ago. Matt was born about eight weeks prematurely. He was delivered by emergency Caesarean section because he could no longer survive in Meredith’s womb. She had suddenly developed a mysterious illness called toxemia that was robbing him of vital nutrients and oxygen.

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In the months that followed, Matt rode the roller coaster of terrifying conditions that threaten infants born too early and too small.

One such problem is hyaline membrane disease, caused by lung immaturity; it is what killed President John F. Kennedy’s three-pound newborn, Patrick, in 1963. Another is brain hemorrhage, a result of underdeveloped and fragile blood vessels. Other common afflictions include jaundice, caused by insufficient liver function, and an intestinal disorder called necrotizing enterocolitis, which can require emergency colostomy. Matt had brushes with all those conditions, and others. But eventually he overcame the terrible handicap of prematurity. And today he is an example of neonatology’s proudest achievements.

With little notice, neonatologists--doctors who treat newborns--are now saving babies born as early as 16 weeks prematurely, weighing a little more than half what Matt did.

Twenty years ago, no more than 50% of the preemies weighing between 2 pounds, 2 ounces, and 3 pounds, 2 ounces, lived; today, more than 80% survive. And whereas fewer than 10% of preemies under 2 pounds, 2 ounces, survived before the era of modern neonatal medicine, about 50% of those between 1 pound, 6 ounces, and 2 pounds, 2 ounces, now are being saved. As recently as 15 years ago, any newborn under five pounds--even if carried full term--was considered a preemie. (Each year in the United States, more than 36,000 infants are born weighing less than 3 pounds, 3 ounces.)

Yet such dazzling statistics, as we learned in the months that Matt spent in intensive care, can mask a darker side of neonatology’s breathtaking advances.

As increasingly premature and smaller infants are saved, many go on to exhibit physical and developmental problems as a result of the very technologies that saved them, problems with which their families and pediatricians often are ill-prepared to deal. Such conditions include epilepsy, cerebral palsy, blindness, mental retardation, learning disabilities and poor motor coordination. Until recent years, relatively few preemies survived long enough for these problems to surface. Today, disturbing questions are also being raised about the psychological legacy created by an artificial environment of constant lights and noise that, on top of all the medical procedures, must be stressful to a tiny fetus that should still be inside the womb.

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Until just before Matt was born, Meredith’s pregnancy had been uneventful.

In retrospect, the first warning had come several weeks earlier when Meredith’s face and ankles puffed up, as I noticed after returning from a business trip. But we thought little of it. Swelling during pregnancy is not rare; the uterus, in expanding to accommodate a growing fetus, can obstruct the return of blood from the extremities to the heart.

A few weeks later, during a routine examination, Meredith’s normally low blood pressure was found to have shot up markedly. Our obstetrician, Katherine F. Carson, immediately ordered Meredith to go to bed and stay there. Why toxemia causes an increase in blood pressure is unclear, but bed rest is one way to reduce it. That afternoon, Meredith quit her job.

The final sign was unmistakable. Shortly after dinner that night, Meredith, then 33, vomited blood. We immediately called Carson, a pragmatic, no-nonsense doctor and, at the time, probably the best-known obstetrician in San Diego, where we were living. As we would later learn, Meredith’s liver was being deprived of blood, and the subsequent liver swelling caused the nausea.

Carson, who would die of cancer three years later at 61, had delivered thousands of babies, and she realized that Meredith’s pregnancy had become anything but routine. She canceled her dinner plans and, within the hour, met us at Sharp Memorial Hospital, which has the city’s busiest maternity ward.

There she introduced us to Gary D. Blake, who was beginning his second week on Sharp’s staff as a specialist in fetal and maternal medicine. As it turned out, ours was Blake’s “first big case.”

Toxemia is a little-understood phenomenon that strikes about 5% of pregnant women. In the most severe cases, the dangerously high blood pressure it causes can kill the fetus by deprivation of oxygen and nutrients; the woman can experience coma, seizures or brain damage, and die.

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The disease has puzzled scientists and medical doctors for centuries. The most popular theory now is that toxemia results when a woman’s body mistakes the fetus for a foreign object and mounts an immune-system attack against it, Blake explained. That reaction manifests itself by causing the placenta to go into spasms, choking off the blood supply to the fetus and preventing carbon dioxide from leaving the fetus.

“When confronted with toxemia, two questions arise: What is the risk to the fetus? And what is the risk to the mother? They are separate questions,” Blake continued. “Some babies are sicker than their mothers; some mothers are sicker than their babies. You don’t always know, and that’s where clinical judgment comes in. If this had happened a couple of weeks earlier, Matt would not have done as well. But he was right in the middle. And the difficulty of that decision (of whether to wait or to perform an emergency c-section) is what led Katherine to call me.”

When either the fetus or the mother is clearly in imminent danger, as Matt was, “the only treatment is delivery--the ultimate therapy,” Blake said. Carson would put it more bluntly a few days after Meredith’s c-section. “He’s better off in the ICU than in there,” she said, pointing toward Meredith’s womb.

In less urgent cases, physicians can buy time by ordering bed rest to keep a woman’s blood pressure down, which allows a fetus to mature further before delivery, perhaps increasing its chances of survival. Because the lungs are the last major organs to develop in the womb, respiratory problems commonly are the first to confront neonatologists. The immature, inelastic lungs lack a vital lubricant called surfactant, which helps the air sacs expand and stay open.

To accelerate fetal lung development, doctors sometimes administer steroids to the woman before delivery. The steroids speed lung maturation in the fetus by inducing surfactant development. But they take two days to work and, in our case, there was no time.

Blake and Carson quickly called in the diagnostic equipment. Right away, the results were ominous. An ultrasound reading showed that the fetus was extremely small for its gestational age. A normal fetus at Matt’s stage of development should have weighed 3.5 pounds; Matt was 50% lighter than he should have been. This suggested to Blake that, for about two weeks, Matt had not been getting sufficient nutrients.

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The clincher was provided by an electric fetal heart monitor. It sent very narrow beams of ultrasound into the womb, where the sound waves bounce off the fetal heart valves, sending back a rhythmic, pulsing sound that is recorded on a computer printout. It showed that Matt’s heart rate dropped precipitously each time Meredith had a minor contraction.

Such uterus contractions are not uncommon even in early pregnancy. As the uterus expands, the muscles naturally contract in reaction to the stretching. A healthy fetus can easily tolerate such contractions, which squeeze off blood flow through the placenta for several seconds. But the heart monitor was clearly showing that Matt’s oxygen reserve was “very marginal,” Blake said. “It’s like asking a chronic smoker to hold his breath for 60 seconds. He would have a pretty hard time doing it, whereas most healthy people can easily do that.”

As the four of us stared at the heart-monitor readings on the computer printout, time seemed to move hardly at all. Meredith and I had no way of knowing then that the heart monitor would become the first of many unfamiliar machines we would come to know intimately in the long months ahead.

As they quietly conferred, Blake and Carson looked increasingly grim. Then the soft-spoken, sensitive young doctor told us that there was no choice but to deliver Matt immediately. “If left in, Matt would have died,” Blake later recalled. He and I watched as Carson performed the c-section. No more than two hours had passed since we called her at home.

Sharp Memorial Hospital is connected by a corridor to Children’s Hospital and Health Center. The walk from Sharp’s operating room to Children’s neonatal intensive care unit (ICU) takes perhaps five minutes.

By the time the incubator bearing Matt reached the ICU on the night of Aug. 19, 1981, his extremities were no longer blue--a promising turn of events to Richard W. Henderson, the neonatologist who had scooped Matt out of Carson’s hands only a few minutes earlier.

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Henderson was further encouraged when Matt’s heart rate improved, thanks to the oxygen he had administered en route.

Best of all, Matt had shown no sign of the dread respiratory distress syndrome. In fact, he soon began breathing on his own. Many preemies require a ventilator--a bulky machine with plastic tubes, the size of vacuum-cleaner hoses, attached to a mask--to breathe for them. But ventilators can force too much oxygen-rich air into the fragile air sacs, causing the capillaries surrounding them to burst, flooding the lungs with blood. That, in turn, may require increased ventilator pressure to clear out the lungs, perhaps leading to permanent scarring. Too much oxygen can also cause vision problems, including blindness.

“He was lucky in that he never had to be on a ventilator. That increases the risk much more severely,” Henderson said. “He was the kind of baby we like. He was off and running.”

But Matt wasn’t out of the woods.

Preemies are prone to stop breathing because their immature nervous systems forget to instruct them to do so, a condition called apnea. So electrodes attached to an apnea monitor were taped to Matt’s skin. Whenever he stopped breathing, as he often would in the months ahead, an alarm would go off. Usually, all it took was a gentle touch to prod him to resume breathing.

And despite the heat of his incubator, Matt’s body was still too cold--96.2 degrees--because he had virtually no fat deposits, which normally would have developed in the final weeks of pregnancy. He also desperately needed proteins, sugars and fats, all of which had to be administered intravenously. A catheter through Matt’s umbilicus monitored the levels of carbon dioxide and oxygen in his blood--indexes of lung and kidney function.

Meredith had been awake during the c-section and wanted to see Matt right away. As the emergency transport team stood by, Henderson brought him over. She reached out and touched his tiny hand, and then Henderson and Matt were off. I was suddenly torn by an agonizing decision: stay with Meredith, or accompany Matt to the ICU? There was nothing that I could do for Matt, and Meredith clearly was in pain. So I stayed. Only after she was settled in the recovery room did I rush to the ICU, wondering if I had already seen the last of my son.

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It was approaching midnight when I entered the alien world of the neonatal intensive care unit. The room was brightly lit and bustling with men and women in hospital gowns. It seemed dominated by machines: high-tech incubators surrounded by heart and apnea monitors, ventilators, IV bottles dangling from poles and dripping vital liquids into the motionless forms. Only an occasional rocking chair for visitors softened the scene. Shrill and rapid beeping noises--emanating from apnea monitors--filled the air.

It took some effort not to recoil at the sight of this roomful of scrawny, wrinkled preemies with tubes poking into their nostrils and needles in their brittle skin. Preemies have skin that can tear easily because it lacks sufficient amounts of keratin, a tough, fibrous protein that makes normal bodies watertight and keeps normal skin flexible.

Many of the infants were tied down to prevent any movement that might dislodge the IVs. Some were blindfolded as a protection against the bright phototherapy lights used to treat jaundice. Others seemed comatose as ventilators made their tiny chests heave up and down.

My initial bewilderment did not surprise Michael Segall, now head of Children’s neonatal intensive care unit. “Even most doctors who are not neonatologists find it an overwhelming experience,” he said later.

When I regained my focus, I spotted Henderson hunched over a corner incubator, attending to a baby. It was Matt.

Soon, Henderson was joined by other medical personnel, including some who were there to draw Matt’s blood to test for acidity, carbon dioxide, salts, proteins, sugars, red blood cells and kidney function. Finding veins in a preemie isn’t easy; it often takes repeated stabs. “It’s like trying to put a garden hose into an adult vein,” said Dr. Randy C. Randel, a partner of Segall.

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Because many preemies have only a few ounces of blood, the need to repeatedly take blood for lab workups can require frequent transfusions. All of which can leave a preemie severely bruised.

It was well past midnight when Matt seemed stabilized. But having no idea what to expect in the hours or days ahead, I told Henderson that if Matt did not survive, I wanted to be the one to inform Meredith. He was amenable but sought to reassure me by saying he thought that Matt had an 85% chance of making it.

Matt showed no deterioration on the second day, though his weight dropped slightly. But that in itself was not worrisome. Even healthy babies tend to lose up to 10% of their birth weight in their first week because they, too, may not eat as efficiently after making the transition from the womb.

By Day 3, Matt was doing well enough that Henderson began him on half-strength breast milk, administered by a stomach tube inserted through the nostril. But, we quickly learned, a preemie’s progress is hard to predict. Even as he skirts one problem, another may lurk around the corner.

Matt did not tolerate the feedings well and quickly developed abdominal swelling--a troubling sign. And for 52 hours, there was no evidence of stool, another indication that his digestive system was not functioning.

Henderson, a businesslike but compassionate man who describes himself as a “go-getter,” immediately stopped the feeding and, with extraordinary candor, apologized to us for having started Matt on milk before his digestive system was ready.

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That setback led Henderson to suspect the onset of necrotizing enterocolitis, a condition in which the intestinal lining is attacked by the infant’s own bacteria. In severe cases of NEC, the bowel stops functioning altogether and eventually ruptures, spilling its contents into the abdomen.

The only treatment is a colostomy--the creation of an opening in the abdomen to which a bag is attached as a waste receptacle. It was a procedure we first heard about in detail from the parents of a preemie in the incubator next to Matt’s. They told us about it as they lovingly took turns changing bandages on their little girl, an NEC survivor.

Luckily, Matt’s X-rays showed no evidence of air in the intestinal lining--air that would have been nitrogen, produced by bacteria. Shortly afterward, his digestive system resumed working.

At another point, Henderson suspected that Matt had intracranial bleeding, another common affliction among preemies because the still-developing brain is highly susceptible to hemorrhages. Vessels in the brain of a fetus are extremely fragile and can almost routinely break, causing minor bleeding. But such bleeding typically stops within a few days, and the clots eventually are reabsorbed into the uterus and replaced by brain matter. But without the uterus, preemies are deprived of any mechanism for this reabsorption.

In some preemies, the bleeding is tiny and localized and can dry up and disappear without causing damage. Massive bleeding, on the other hand, can cause scars on the brain, leading to mental and motor problems. A portable ultrasound head-scan machine was wheeled over, and a hand-held tube shaped like a flashlight was passed over Matt’s head. The murky images projected on a TV-like monitor proved reassuring. There were no dense, dark areas that would indicate severe hemorrhaging.

By Day 8, at long last, Matt began to gain weight, averaging half an ounce a day. Most of the babies were weighed each morning at 8, and we would call a few minutes later to check on his progress. A gain of even a fraction of an ounce was reason to rejoice. We fretted if there was no gain. The slightest loss sent us reeling.

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In that second week of life, his head also began to grow--another good sign. Feeding by stomach tube resumed in the third week. This time Matt tolerated it well.

Day and night, we telephoned the ICU. And at least once a day, usually more often, we visited Matt. As in most ICUs, staffers gently encourage parents to participate--as much as they feel ready to--in caring for their preemies.

We talked to him. We bathed him. We combed his hair with a toothbrush. We learned to change his diaper, a feat that required dexterity because we had to work through the incubator’s portholes, negotiating around the wires, the tubes, the sensors. His skin was still vulnerable to tearing.

Often, we simply watched over Matt as he slept. We sometimes found ourselves captivated by a bulletin board in a corner of the ICU that was covered with snapshots of ICU “graduates.” Some of the children clearly looked better off than others. But they all seemed happy--and so did their parents.

Always, we were made to feel welcome by the ICU staff. But as the weeks dragged on and August turned to September, Matt’s hospitalization began to take an unexpected emotional and psychological toll.

On an afternoon visit to the ICU, Meredith found that Matt’s head had been shaved on one side, and an IV was attached to the bare spot. Mary Jenkins, a neonatal nurse clinician in the ICU, had thoughtfully saved Matt’s hair for us. But that did little to soften an unbearably painful sight. And it was all the more shocking because nobody had warned us about the difficulties that preemies can experience as a result of prolonged intravenous feedings. Their vessels are so small and fragile that needles often work themselves out of the veins, sending fluids into the skin instead. That, in turn, causes swelling at the puncture points, requiring new insertions every three or four days. But alternative IV sites are scarce, and the skull is a final alternative to the hands, the arms and the feet. After that, IVs would have to be surgically implanted.

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On another visit, I automatically headed for the spot where his incubator had been that morning. But a different baby was there. My first thought was that Matt had died. It turned out that his incubator had been moved to accommodate new arrivals.

It wasn’t until Labor Day that the doctors thought Matt was doing well enough to tolerate 10 minutes outside the incubator. And so, more than two weeks after he was born, we got to hold our baby for the first time. It was a profoundly moving moment, and it was timed by a clock.

By mid-September, Henderson began to talk about discharging Matt from the ICU, just as soon as his slightly low blood-sugar level could be raised and stabilized. In time it was.

On Sept. 28, bursting with happiness, Meredith and I accompanied our 3-pound, 15-ounce baby boy, dressed in a special outfit for the occasion, as he was wheeled in his incubator back to Sharp Memorial Hospital--40 days after he was born. It was still two weeks before his due date.

Matt was admitted to the nursery, and Meredith began breast-feeding him. He also was placed on a heart and lung monitor because he still had apnea episodes.

But our joy was short-lived.

Three days later, Matt developed an increased respiratory rate that suggested pneumonia, hepatitis infection, or cytomegalovirus, a viral infection that can cause abnormal cell enlargement, leading to brain damage.

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Immediately, Matt was taken back to Children’s neonatal ICU. “It was almost defeat on the edge of victory,” Henderson recalled recently. Such ups and downs, he said, “are the nature of the game. It’s like the stock market: A climb is never steady, but jagged.” Necrotizing enterocolitis, for instance, can often strike just as a preemie appears to have taken a safe course.

Matt was lethargic and, more ominously, needed oxygen. And once more, needles were stuck into him.

As Henderson and other specialists puzzled over Matt’s inexplicable relapse, we grew increasingly concerned over his need for oxygen, because by then we had learned about an oxygen-induced vision disorder, common among preemies, called retrolental fibroplasia.

Any amount of oxygen above the 21% that is normally in room air can damage a preemie’s fragile blood vessels in the retina by altering cell metabolism in ways still not fully understood. In the 1950s and ‘60s, giving high dosages of oxygen was a standard treatment for preemies, and it caused vision damage, including blindness, on a wide scale. Today, oxygen is used much more sparingly, though the choice between blindness or death has not been eliminated. And last year, neonatologists and pediatricians in Washington warned that the intensity of lighting in neonatal ICUs has increased by fivefold to tenfold in the past two decades, and this may contribute to vision problems because the lights may make the eyes more sensitive to oxygen’s effects. Lighting in the ICU has increased because many of the delicate new procedures require greater illumination.

On the fourth day of Matt’s second admission to the ICU, tests showed him to be jaundiced, confirming what we had diagnosed with our own eyes--his skin was severely yellowed. Further tests, including ultrasound, ruled out liver tumors or cysts. That stymied the doctors, but some still suspected liver disease. A specialist suggested an exploratory biopsy, in which surgery would be performed to allow the removal of a piece of liver tissue for analysis--very much a high-risk surgery at this point. By then Matt was off oxygen, but he had a fever of 101.8 degrees.

Meredith and I were reaching the limits of our endurance. Clearly, Matt was not well. But there was nothing more the doctors could do for him. Jenkins, the ICU nurse, had said as much. The doctors also agreed that Matt would be just as well off at home as in the ICU. Once a week, we would bring him back for examinations.

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On Oct. 27, not long after when Matt should have been born, Meredith carried him out of Children’s Hospital. He still weighed less than five pounds.

Taking Matt home was a gamble, though we never doubted that it was the right move. But there were now new stresses. Despite the hours we had spent in the ICU, we had not been Matt’s primary caretakers. It was one thing to feed and bathe him, but another to act when the apnea monitor sounded. Now we were all he had.

Matt’s stomach capacity was extremely limited, so he had to be fed every two hours or so, around the clock. Even taking turns provided us little relief or rest. On top of that, either his heart monitor or apnea alarm seemed to go off incessantly, sending a shrill beep through the rooms.

But the jaundice was going away, and Matt slowly was beginning to thrive. In early December we drove to our new home in Los Angeles, with Meredith holding Matt in the back seat. At Childrens Hospital in Los Angeles, lab tests showed that Matt’s liver function was improving, and a specialist there agreed that a biopsy would not be necessary.

Last fall, the wisdom of our decision to take Matt home was confirmed by a University of Pennsylvania study that found that some preemies released early are likely to turn out as healthy as those kept in the hospital longer--maybe healthier. “The ICU environment, we know it’s abnormal,” Segall says.

In the past five years, Matt has been examined regularly by psychologists at the Newborn Followup Development Evaluation Clinic at the hospital where he was born. The program was set up in 1974 to follow the development of the hospital’s neonatal ICU graduates as a way to give the neonatologists feedback. “It was very important to them that all the kids turned out well,” said Kristin Gist, one of the clinic’s psychologists.

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In all, Gist and colleague Ann L. Bohanan have examined 2,000 graduates, testing them for everything from intelligence to psychomotor skills. For us, these periodic evaluations have been a source of comfort and reassurance. We have learned, for example, that Matt is way ahead of his age group in language skills, but slightly behind in visual-motor skills, and that he does best in a structured environment. Whether these traits may be directly related to his prematurity is anybody’s guess.

But one of the risks of the program, Gist said, is that such information can be used inappropriately. For instance, the parents of one preemie enrolled the child in school much too early, on the basis of one high test score. A more common trait that Gist and Bohanan have found among parents of preemies is a tendency to be overprotective. “Our kids seem to be more dependent,” Gist said. When one such child was asked to draw a picture of herself, she drew one of her mother.

Many parents also have told the psychologists that their children seem to have a greater-than-normal tolerance for pain, perhaps as a result of the early introduction to pain. That is not the case with Matt.

It is difficult to overestimate the extent to which the sudden arrival of a preemie can disrupt family life. It is not unusual for it to break up a family, Gist said. “Financial stress is the No. 1 factor in our referring a family for psychotherapy.”

Indeed, Matt’s hospitalization had caused us to wonder if we could remain solvent. And that stress was not allayed by the hospital’s seemingly excessive concern about our paying the 20% that our insurance did not cover. One day early on, Meredith stood by as a spinal tap was done on Matt. Minutes later, and still shaken by the ordeal, she heard herself paged by the hospital’s business office.

To be sure, a lot of money was at stake. In 1981, a day in the ICU started at $1,400, and that did not include the innumerable lab tests and diagnostic procedures, or physicians’ fees. At the time, our insurance covered in full the first $3,000, and then 80% for the following 15 days, before resuming total coverage, up to a point.

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Our debts multiplied at a runaway pace. At the same time, Meredith and I felt guilty because we were concerned not only with Matt’s health but also with the bills that his hospitalization was generating. Matt’s bills totaled about $150,000.

But feeling badgered by the hospital’s business office and other bill collectors was, in retrospect, a minor irritant. We can see now that far more important is the issue of when to begin--or stop--treatment, and how much to tell parents so they can be fully involved in the decision-making process. It remains a vital and timely question as neonatal technology and know-how continue to improve.

Surely, the instinct is to go all out in treating every preemie. That certainly would avoid most legal and perhaps even moral pitfalls. Yet, what about those iatrogenic (physician-created) problems--the blindness, the motor difficulties, the learning handicaps, necrotizing enterocolitis?

To pretend that there is no treatment decision to make is perhaps an arbitrary and potentially devastating decision of default. “You’re going to save some babies you wish you hadn’t,” Henderson says. When he was a medical student in the 1960s, Henderson says, 2 pounds, 2 ounces, was the cutoff weight at which point treatment generally would not be considered. As recently as 10 years ago, most preemies under 1 pound, 12 ounces, were not expected to live.

“Today, we’re down to the 500- to 600-grammers (in considering whether to begin treatment),” Henderson says. (Matt weighed 980 grams.) Put another way, the cutoff now is at about 24 weeks of gestational age. Below that, little can be done to compensate for extreme lung immaturity.

Many parents will ask neonatologists to take heroic measures even after being told that their baby’s condition is hopeless; when confronted with such requests, Segall will accede to them. “Sometimes I want to say: ‘Why are you doing this to your child and to yourselves?’ But professionalism prevails. If you can’t be 100% sure that it’s irreversible, you do your job.”

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The question of how much to tell the parents is something “we play by ear,” Henderson said. “Sometimes we almost get caught giving too much information.”

Segall agrees. “It’s very important for parents to be appropriately informed,” he said. “There’s only so much an individual can absorb. Our basic policy is honesty. That means pertinent information. I’ve seen some parents become psychological cripples from over-information. Certainly an overview of neonatology is too broad. But it’s far better to be informed than to come in cold--like you did.”

In the early goings during Matt’s hospitalization, what little we knew to expect was gained only through personal research. I wish that someone had mentioned to us that there is a strong association (up to 50%, Segall said later) between prematurity and hernias. They occur because early feeding in the incubator puts excessive pressure on a preemie’s underdeveloped abdominal muscles, making them susceptible to rupture. At age 2, Matt developed a hernia while we were in rural Hawaii and required corrective surgery after we got home.

We also had not been told that ominous signs of cerebral palsy were detected during Matt’s first follow-up evaluation at 6 months of age.

We only learned of that concern during our interviews with Gist and Bohanan last October. On that point, Meredith and I disagree. I wished they had shared their concern with us, but she was relieved that they had shielded us from yet another worry. In any case, by age 1, at the time of Matt’s second follow-up exam, the signs of cerebral palsy had largely disappeared.

Compared to most preemies, Henderson said, leafing through a several-inch-thick stack of Matt’s medical records, “he had a benign course.”

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Today, Matt is an inquisitive, fun-loving and intelligent boy with well-developed social skills. The only physical reminders of his ordeal are tiny needle scars on his hands and feet. He is truly a success story for neonatology.

But the story doesn’t end here. Several promising treatments and techniques could become available in the next few years to reduce the severity of respiratory complications and further improve the survival rates of children like Matt.

One is a high-frequency ventilator that can deliver oxygen with far less pressure than current models, thus significantly reducing the likelihood that air will leak from the lungs into the chest cavity, where its pressure can cause the air sacs to collapse. Also on the horizon is the use of human surfactant, taken from the amniotic fluid of healthy women. So is a machine that could replace the ventilator altogether by oxygenating a preemie’s blood outside the body and then returning it.

But even without these potential advances, neonatologists are confident that they can gradually continue saving younger and younger fetuses simply by refining current techniques. At the same time, other medical specialists have begun to treat fetuses with life-threatening conditions while they are still in the womb.

Such progress inevitably raises profound ethical, moral and legal questions concerning the point at which a fetus becomes a viable human being. In its 1973 Roe vs. Wade decision, the U.S. Supreme Court legalized abortion up to the point of viability. Then, that was about 28 weeks of gestational age. Today it’s around 24 weeks, and dropping.

So as medical science keeps expanding the gray zone that attempts to define when life begins, it is also inexorably pushing society toward a day of reckoning when fetuses that might be aborted are almost certainly viable. And just how far we are willing to let technology take us will be determined not only by neonatologists and the parents of preemies consumed by their own crises, but by all of society.

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