The ability to sustain life by artificial means also confronts physicians with deciding whether and when not to do so. What follows is the account of one such decision, made in a Washington area hospital this year. The names have been changed to protect the privacy of individuals involved. Everything else is reported as it occurred .
"What's this?" asked Dr. James Hannan, the director of the intensive care nursery, as he stepped up to the warming table.
His hands were busy behind his back, tying his gown closed, as he looked down at the table and saw Baby Boy Alvarez for the first time. "Oh, Jesus," he said softly.
The 6-pound, 8-ounce baby lay on his back, his chest and grossly distended abdomen rising and falling with each of his sharp, saw-edged cries. His dusky blue-gray color was accentuated because he was not bathed before being rushed to the nursery from the delivery room floors below.
The tan shades already were lowered across the nursery's plate-glass windows, protecting the privacy of the baby and the sensibilities of visitors coming to view other sick infants. For Baby Boy Alvarez did not look right. His clubbed feet were obvious, as were his bowed legs. And there was something odd about his face. Not something one could immediately describe. Just some thing odd.
"This leg's shorter than the-other," said Dr. Ari Javed, a young member of Hannan's staff. He felt the baby's barrel-shaped abdomen. "I think it's an abdominal mass; it's tense. Can we get a catheter?
"Get an X-ray! FAST!" Hannan ordered. "Jeees; I wonder if he's got (intestine) in his chest. You hear anything up there?" he asked Javed, who was removing his stethoscope from his ears.
"Yes," replied the younger man, a pediatrician training under the director to become a neonatologist, a sub-specialist who cares for infants for their first 28 days after birth.
"Is it bowel?"
"I don't know," Javed responded.
"He looks premature on top of it," Hannan observed.
"He's 36 weeks," replied Javed, checking the chart on the infant born about 20 minutes earlier by cesarean section and finding him three weeks short of full term.
Although other staff members drifted over to look at the new arrival, his presence did not long disturb the natural rhythin of the nursery. There were more than a dozen other infants to care for, and to ignore any of the electronic systems monitoring vital signs could mean the difference between survival and death.
Hannan directed Javed, a respiratory therapist, a first-year resident and two nurses as they peformed the anitial workup on the baby including insertion of a catheter in his umbilical artery. The catheter would allow blood to be drawn to test oxygen levels, but the insertion was complicated by yet another abnormality.
In addition to his other problems, Baby Boy Alvarez had a small opening in the umbilical stump leading back to his baldder. The opening usually disappears long before birth.
Despite being given supplementary oxygen, the baby was turning a progressively darker shade of blue. "Could we increase to 100 percent oxygen (room air is about 20 percent) for the time being" Javed asked.
"Put him up to 100 percent and let's eyeball him and see where we are," said Hannan. "Okay, let's get a picture and see what's in his chest, because I think we're going to have to go to the ventilator (respirator) with this."
As the X-ray technician rolled in the nursery's compact, infant-sized, X-ray machine, Hannan spotted a new figure in the nursery. A short, pale man with a drooping mustache and an expression to match stood hesitantly by the door, trying to see what was being done to the baby on the table -- his first child.
Hannan took the man out into the hallway by the nursery's door. "The baby has a number of problems," he told Raul Alvarez, skipping the usual doctor-patient small talk. "We've been going over the baby and there are what look like some abnormalities of the lower extremities."
Alvarez, whose English was a bit shakey, cocked his head slightly to one side, apparently unsure of what he was being told.
"The lower limbs have some difficulty with them." Hannan told him. "In examining the abdomen there are some lumps I'm not sure should be there. Most of all, your baby is having difficulty breathing. I don't know why," he admitted.
"I don't know whether the baby's having difficulty breathing because there is fluid in the chest, or there is an abnormality in the chest itself. We're taking some X-rays now, and as soon as we know something we'll let you know, okay?"
"All right. Thank you," said Alvarez. As he drifted dazedly out of the nursery, his expression said the rest.
The baby's breathing grew more labored as the staff worked to get him hooked up to a respirator. "Get some suction." Hannan ordered. "He's really getting raunched!"
At that moment the X-ray technician returned with the first picture of Baby Boy Alvarez's insides.
"WOOO!" Hanan exhaled loudly, holding the film up to the viewing light. "What have we got? He's got a funny globular heart. It may be a transposition... I don't know, but he's got a big right-sided buldge. He may be a hypoplastic (underdeveloped) left heart with a big right-sided heart. It looks like it has some fluid and the left side's got some junk in there. I don't know what it is. The diaphragm's in just about the worst position," he said, poining at it with one of the yellow pencils that protruded like a pair of horns from the hair falling over his ears.
"I need some better quality X-rays," said Hannan, as he viewed the one picture with a mixture of intense concern, curiosity and some amazement.
"He's got some real funny bones. He's got a weird-looking clavical on this side, plus what looks like a malformation of the cartilage. That's got to be stomach, so that's the right side," he said to Javed, who peered intently at the X-ray with him.
"What's that bone on the right?" asked Javed.
"No, below that."
"That's bizzaro!" Hannan respondended. "It could be thymus, but I'm not sure... One way or another, the kid's going to need surgery," he said, returning to the baby's side. "Well, I don't know. First we've got to figure out what he's got." He began to examine the baby's penis.
"Do we have a problem..." he said quietly. "You know what this is?" There was a bit of sticky, black substance on the tip of the penis. "He's passing meconium (prenatal feces) out of here. What do you want to do, guys... ?"
He then left a message with Dr. Robert Albert's answering service, requesting that the pediatric surgeon call immediately.
The infant, Hannan observed, might not have functioning kidneys. And the next question was what was happening with his bowels.
"He probably doesn't have an anus." said Hannan, curning the baby on his side to examine him. "Oh, boy! Just a dimple. He hasn't got an anus."
"That's interesting," mused Javed.
"Interesting isn't the right word." said Hannan. He moved to take a phone call from the pediatric surgeon.
Hannan explained the situation to Albert, who agreed to come to the intensive care nursery to examine the infant.
That task completed, Hannan walked over to Rual Alvarez, who had returned to the nursery and was standing silent, starting at his baby.
Hannan explained to the father that the picture was growing bleaker with each new test, each new bit of knowledge. The baby's urinary tract was abnormal, his digestive system somehow diverted from its normal location. There was also a suspicion, the doctor said, that the baby's esophagus and trachea were connected, making breathing difficult and eating impossible without surgery.
"I've asked a pediatric surgeon to come by. He should be here by 7 o'clock and he'll chat with you about his findings," Hannan said. "I think it's probable there's something wrong with the baby's heart as well. There are many organ systems that are not right. We'll know more when we get more X-rays."
"So," said Alvarez. "So, what can I say?" He shrugged slightly and his deep, brown eyes were filling with tears. "It's stupid to make any..."
Hannan stopped him. "That's why we want more information. Dr. Albert is a surgeon and sees many problems and he can tell us if there's anything a surgeon can do."
"What do you think is the reason? We are very healthy."
Hannan began to speak, but thinking better of it, escorted Alvarez down the hall to his office, where they could have some privacy.
"I don't know what might have caused this in the past," he began, after the two had sat down in the cluttered cubbyhole, "and I don't know what to tell you about future pregnancies. I will, by the time we're finished with this, have some advice as far as how to go about investigating the possibilities of future pregnancies, as well as what can be done with this baby. But right now, I don't have enough information."
"Of course," agreed Alvarez. "This is very soon."
"I just can't say with honesty what could have caused this in this pregnancy," said Hannan. "It's extremely" -- he stressed the word -- "anlikely that there was any way of knowing about this before hand.... With these problems you very often don't know.
This is very rare," continued the neonatologist. "Perhaps once a year we see something like this. We can't explain it. It's a tragedy."
"What if we took a picture when my wife was pregnant?" Alvarez asked, grasping for explanations of the unexplicable.
"It's very doubtful," said Hannan. "Even something more sophisticated, like ultrasound, probably wouldn't find anything. One of the cruel paradoxes of the kind of defect I think the baby has is that it's perfectly consistent with the normal function of the baby when it's inside the mother.
"And it's only, once the baby's born," he continued, that this kind of heart defect causes a problem. It doesn't cause a problem when the baby's a fetus."
"So the mother keeps it alive?"
"That's right. The baby inside the mother doesn't need much liver. It doesn't need an intestinal tract because it's not feeding. It's not breathing. It's only once the baby's born. So what we've done now is put him on a machine to breath for him and put a catheter in the umbilica artery to see how much oxygen he's getting."
"You're only think will be then, a few hours to see," said Alvarez, whose English was deteriorating along with his hope.
"I want to consult the surgeon to see what, in his experience, can be done. I want to know that in his experience and my experience there's no hope. Then the question is, can we keep the mechanical ventilation going. If there's no hope, it's another question, to talk specifically about the future isn't appropriate now. I will sit down with you again in an hour or so and make some specific plans."
"I am very sad," said Alvarez. "My sister, my brother. There is no genetic problem."
"We'll have more information later. Why don't you go down and see your wife now. We have to consult, and do some more tests. We'll talk later."
But Alvarez decided to stay near the baby, and stood quietly in a corner of the nursery as Hannan and Albert, who arrived while the father and physician spoke, had their initial consultation.
The consultation was brief and to the point.
Albert did not agree with Hannan's guess that the infant had a diaphragmatic hernia, permitting its intestines to crowd into the chest. Ut he did agree on most other points. The biggest question, he said, was what shape the infant's heart was in.
"So I called in the wrong specialist," said Hannan. The next assessment would have to be made by a cardiologist.
"This isn't terribly helpful," he said, walking over to Alvarez."There are still a couple of distinct possibilities, including a couple that are inoperable. One major possibility is that the left side of the baby's heart, the side that pumps the blood to the whole body, not just the lungs, is underdeveloped. That really would be inoperable.
"The reason I think about this," he continued, "is that I think maybe that's just the right side of the heart we're seeing and it's gotten big to compensate for the left side. Also, just now, we've had to make a rather drastic change in the ventilator setting. You saw the baby get very blue and also grey and mottled? This sometimes happens as the part of the heart doing the work slows down."
"You have to do all you can, but..." Alvarez, who would later dream of his son lying on that table, gasping, paused.
"What do you think?" Hannan asked the father.
"If he lives, he's going to suffer."
"You're welcome to stay," said Hannan, his eyes on his shoes.
"It was our first baby," Alvarez said, tears streaming down his cheeks.
"What can I say?" Hannan asked quietly.
"You still want to keep trying," the father asked the physician. It was both a question and a statement.
"I'll keep going on like this until the cardiologist talks to us." Hannan replied. "There's not much more I can do."
"I don't want the baby to suffer," the father told him.
"Neither do I," replied Hannan.
After seeing Raul Alvarez to the door, Hannan returned to Albert, who had completed his examination of the baby on the warming table.
'I want to make sure I take a vial of blood back with me to drop off at the genetics' lab," Albert told Hannan. "That may be the most important thing now."
The two doctors discussed what the cardiologist might find when he examined the baby. Hannan didn't expect to get much guidance.
"He may look at it and say,'ah, yes, it's hypoplastic [underdeveloped] left heart, but even then it may be operable. Or, he may be able to say it's no-noperable, but he may not be able to say that with any certainty. And that's going to be the problem: How's he going to weigh one against the other?
"But you feel fairly, I don't want to use the word optimistic: You feel there's a reasonable chance to treat the other anomalies?" Hannan asked Albert.
"Yea. They're certainly not life-threatening."
"They're operable?" he asked the surgeon.
"They're operable," said Albert. Baby Boy Alvarez was not yet two hours old.
As Albert sat down to write his notes into the chart, Hannon walked back to his office to call his wife and explain why he wouldn't be home for dinner. CAPTION: Picture 1, An intensive care nursery -- "to ignore any of the electronic systems monitoring vital signs could mean the difference between survival and death." By Linda Wheeler -- The Washington Post; Picture 2, Premature infant grasps a physician's finger. Sophisticated monitoring equipment helps doctors save infants. by Linda Wheeler -- The Washington Post; Picture 3, "I think it's probable there's something wrong with the baby's heart as well."; Picture 4, Support machinery surrounds an infant in an intensive care nursery.; Picture 5, "... we're going to have to go to the ventilator with this..."