Fetal Medicine : A Decision to Wrestle With Nature

Doctors in the newly evolved field of fetal medicine look at sonar images and chromosomes, blood tests and tissue cultures, and, after all the data is spread before them, they are still left with the same haunting question. Should we wrestle with nature or stand back?

This is so because the doctors’ diagnoses are not always used to decide whether to abort or not. Just as often they influence how a baby will be delivered. In fact, in fetal medicine, the timing and mode of delivery can itself be a major form of therapy--or an unspoken decision to let a baby die.

When problems are detected late in pregnancies, past the time for a legal abortion, doctors and their patients must decide whether they will opt for a Caesarean section delivery if there is fetal distress at birth.

Sometimes, the mother flatly says no. Dr. Lawrence D. Platt, USC professor of obstetrics and gynecology at Women’s Hospital in the Los Angeles County-USC Medical Center, often senses that those women are hoping the fetus will just expire naturally, on its own. He knows that, in a handful of cases, doctors have taken women to court to force them to undergo Caesarean sections. He occasionally feels frustrated, feels he should be doing something, but he would never consider such coercive steps. It’s the women’s choice, he reminds himself. They have a right over their bodies. Decisions are individual. He doesn’t have a cookbook on how to do this.

Other times, the doctors themselves are not sure they should try a Caesarean section. The procedure involves risk, so, before cutting open a woman, they want to know what kind of fetus they are trying to save. They often suggest checking, by amniocentesis or a fetal blood sample, to see if the defect is isolated or related to more widespread chromosomal abnormalities.

Risks and Benefits

Making the final decision to intervene is not easy, for each option involves a different mix of risks and benefits.

Sometimes they fight, and win. Dr. Greggory R. DeVore did that once. He is Platt’s colleague, an associate professor of obstetrics and gynecology at USC.

They were twin fetuses, 33 weeks along. One developed fluid in the chest and abdomen late in the pregnancy.

When doctors deliver a baby in that condition, they must immediately give it oxygen. Fluid-filled lungs, though, won’t expand and take the oxygen. So the doctors stick needles in the baby’s chest, right at birth, and try to withdraw the fluid and then quickly pump the oxygen.

This involves tense, tricky timing, for the clock starts ticking once they cut the umbilical cord. They have precious few minutes without oxygen before the baby suffers brain damage.

DeVore and the family with the twins talked over their other options. What they fixed on, DeVore had to admit later, was rather neat.

Immediately before the Caesarean section and delivery, while the fetuses were still in the womb, DeVore studied them on his sonar screen, then pushed a needle through the mother’s abdomen and into the sick fetus’s chest. On his screen, he could see the dangerous fluid spilling out.

“Cut, deliver the baby, ventilate the baby now,” he told the obstetrician.

Baby Doing Fine

Just the other week, DeVore received a very nice letter from the mother, thanking him and reporting that the baby was home and doing fine.

Sometimes the doctors gamble with time, balancing risks and benefits as they judge when to intervene. Janet Horenstein, Platt’s and DeVore’s colleague, an assistant professor of obstetrics and gynecology at USC, faced just such a task when confronted with a case similar to DeVore’s.

Unlike her two colleagues, Horenstein has performed abortions--she worked her way through medical school at an abortion clinic. Terminating a malformed, non-viable 21-week-old fetus with an extra 18th chromosome is easier for her than aborting a relatively healthy fetus she has been watching move on a sonar screen, but she just keeps things separate. She has seen plenty of abused, unwanted children, too many.

She has also seen her fill of confused, anguished pregnant women. What will my baby be like, they always ask, and what would you do? She tells them: We don’t know, we really just provide information. To herself, she thinks: Until now, you were just born or not. Now there are options.

Fluid in Abdomen, Lungs

A fetus, 30 weeks old, had fluid in the abdomen and lungs and a probable heart defect. Horenstein knew that if she tried what DeVore had done, they then would have to deliver immediately. Otherwise, the fluid would regather. But this fetus was dangerously premature, more so than the other one.

If she left the fetus alone, it would die. There was a 90% chance it would die anyway. The mother was willing to undergo a Caesarean section, but was the risk to her of that procedure worth it, given the slim chances her fetus had anyway?

Horenstein knew amniotic fluid had already been drawn and the results of chromosomal studies were due shortly. Wait for the genetics results to show how much other damage there is, she told herself. Wait and buy time.

Nature would not wait, however. Nor, in this case, would it be mastered. Two days later, the fetus died in utero .

Not everyone chooses to terminate when the doctors find major problems. The doctors at LAC-USC, particularly, see many such couples, for the patients there include a high proportion of Spanish-speaking Catholics.

A Simple Blood Test

Many end up in Platt’s office because they have had a simple blood test taken in their doctor’s office.

When the spine fails to close, a fetal substance called alpha fetoprotein leaks out of the opening into the amniotic fluid. So one of the tests regularly conducted on amniotic fluid is for high levels of alpha fetoprotein.

Because AFP can also be measured in the mother’s blood, the state of California this year became the first in the nation to require doctors to offer all pregnant patients such a blood test. The test, though, is merely a screen. Those with abnormal AFP levels still need an ultrasound and often an amniocentesis.

Suddenly, women who know nothing of prenatal diagnosis and advanced fetal medicine find themselves before Platt, facing unmanageable questions about needles and abortion.

I am a Catholic, the mothers say, many speaking in Spanish. I would not do anything anyway even if the test is bad, so what is the point? If that’s what my baby has, then that’s what my baby has. I will take what is given to me.

Fetuses Without Skulls

As the mothers talk, Platt sometimes looks at the sonar screen and sees fetuses without skulls or chest walls.

John C. Hobbins, professor of obstetrics and gynecology at the Yale University Medical School, faces the same situation at times, and those cases trouble him as much as the couples who needlessly terminate.

He has seen how a severely retarded 15 year old can destroy an entire family. He has seen a mother sitting in the hospital nursery with a bedridden baby while three healthy children at home clamor for her.

“The flip side pisses me off, too, those that refuse to abort horrible fetuses that will survive with major abnormalities of the brain and neural tubes, that won’t die,” he said. “What bugs me is not that some are against prenatal diagnosis and termination, but that they seek to impose (their views) on all others.”

Worries About Court

So he worries about the Supreme Court.

“If they get one other justice on there and the (Roe vs. Wade) decision goes the other way, I’m sure there wouldn’t be an exception for abnormal babies. People come to us now have a choice. God, that would be awful to have no choice. I’d have to tell them, ‘You got it, and there’s nothing we can do.’ It would greatly limit our ability to treat. We’d dry up. That’s something to think about.”

Just as abortion is a constant theme in the doctors’ world, so too is the concept of the fetus as a patient. As the fetus draws ever closer to them, impressions shift and blur. One moment the fetus is a real and tangible being, at another, something less fully realized.

Horenstein walks through the neonatal intensive-care ward at LAC-USC, looking at tiny 750-gram, 1-day-old premature newborns wrapped in tubes and oxygen tents. They are little different in size or shape from the fetuses kicking on her sonar screen.

Sonar Monitoring

Dr. Angela Scioscia, who works with Hobbins at Yale, monitors some of those fetuses on a sonar screen and aborts others. She tells herself they are forming but are not as real as someone you talk to or relate to.

Dr. Robert Wassman, associate director of the Genetics Institute in Alhambra, cannot forget the first time he saw a human fetus, a miscarriage, lying in a bed pan in the back room of the ward. A junior in medical school at the time, he stared at it for an hour. This looks less like a baby than a bizarrely proportioned adult, he thought. This would have been a human being.

The families often straddle this blurred line along with the doctors.

One day, an amniocentesis at Yale on a 19-week-old fetus disclosed Pompe’s disease, a malady in which the body accumulates glycogen in the heart muscle, leading to certain death by the time the baby is 6 months old. The family had already lost one baby to this disease. It was just a matter, the doctors told the parents, of when to say goodby. The couple decided not to wait.

After the termination, the couple held their aborted fetus in their arms.

‘They Feel Like Murderers’

This is not so unusual. Jodi Rucquoi, a Yale family therapist and genetics counselor, has watched similar scenes often.

“They feel like murderers. It’s that simple,” she said. “In their heads, they know why this was done. That’s why they had the test. But, inside, they feel like murderers anyway. I encourage them to see and hold the fetus. Most do. They say hello and goodby. They’ll handle fingers, say things like, ‘Oh look, she’s got your shape fingers, Daddy’s long legs.’ ”

Rucquoi paused and stared down at her hands.

“I’m just thankful that when I had my kids we didn’t have any of this,” she said softly. “I would have been so scared.”

The reality of the unborn patient is new to us, Dr. Maurice J. Mahoney said later that afternoon. He is a Yale pediatrician and medical geneticist.

‘Silent Scream’

It is a true and good concept, he said, as long as it is based in reality and is not distorted by the type of images evoked in “Silent Scream.” That film, produced by those opposed to abortion, had suggested tiny embryos were screaming in pain at the touch of a needle. To Mahoney, that just misses the point.

When life begins, and whether the fetus is a person, “are political, not biological, questions. In this country right now, it comes down to when it can exist on its own. In a theocracy, there would be different issues, matters of revealed truth rather than discovered truth. For me as a doctor, the fetus is a patient right from the beginning . . . . But I have a commitment to pluralism as a mainstay of this society.”

Abortion, Mahoney reasons, is the less bad choice of available options today. Hopefully, there will be better choices tomorrow. In a sense, selective termination is euthanasia allowed at a stage that is not available later.

“As in other areas, technological advances leap past other concepts. If I planned the world, maybe I would keep things together, but I don’t see how it could ever work like that. I don’t see the world ever slowing down, not competing, not advancing. We create tension if it doesn’t exist. Maybe we have gone too far too fast, but that is the nature of human beings.”

Brave Pioneers

It is only when they manage to help a family that the doctors’ doubts and confusion dissolve. Then their success serves as justification for all the trouble. In these moments, the doctors are transformed from uncertain tradesmen into brave pioneers in uncharted territory. Their hands are steady, their eyes knowing and kind.

It seemed that way one morning, when Hobbins met a pregnant mother who had traveled alone from Michigan.

Was Carrying Twins

She was carrying twins, one already dead in the womb. Doctors believed she had a type of blood that might be reacting against her own fetuses, forming antibodies to fight and break down their red blood cells. Had the fetus died from the blood problem, or from something else?

Most important, was the live fetus’s blood now under attack?

To judge, Hobbins needed to take a blood sample from the living fetus. He studied his sonar screen for 20 minutes, searching for the right spot, a spot that would be safe for his needle. Finally he found it. “OK, let’s go,” he said.

‘Like Bobbing for Apples’

Holding a 25-gauge needle over the woman’s abdomen, he watched the screen, then pushed it through her skin. On the screen, he could see the fluorescent point enter the uterus. He guided it toward the umbilical cord. His target, the large blood vessels where the cord joins the placenta, was all of three millimeters long.

The fetus, a foot long and a pound in weight, suspended in amniotic fluid, floated away as the needle approached. “It’s like bobbing for apples,” Hobbins said.

On his screen, he could see that his first insertion had slanted in between two veins. He had to remove the needle and start again.

“You’re not going to believe this, but I have to cough,” said the pregnant woman lying on the table.

“I don’t want to believe that,” Hobbins said. “Hold on.”

Tells ‘Good News’

Finally, he reached the spot he wanted on the umbilical cord and drew blood. Hobbins carried the sample down the hallway to the lab for testing. Ten minutes later, he bounded back into the room.

“All right, good news. The baby’s blood is normal. Whatever’s going on in the amniotic fluid, it’s not a problem with this fetus. We can send this lady back to Michigan.”

The mother was grinning broadly. So was Hobbins.

There are other moments, though, which achingly remind that the newly risen world of fetal medicine is nascent and complicated, a wondrous but anguished mix. There is, for example, the case of Barbara.

She was 30 years old, a warm, soft-spoken woman with a husband and healthy 4-year-old boy at home. Now she was pregnant for the second time, lying on an examination table in her doctor’s office as he studied her fetus on an ultrasound screen.

‘Is It All Right?’

This doctor seemed to be taking a long time, and he wasn’t saying anything.

“Is it all right?” she asked.

“Oh, yeah,” the obstetrician answered.

So Barbara got up and went back to work. It was not until later in the day that her doctor called to say one of the fetus’s kidneys seemed enlarged, way too big.

The doctor referred Barbara to the Genetics Institute in Alhambra. Arriving there the next morning, she was ushered into an examination room. In a corner stood an ultrasound machine that looked much bigger and fancier than the one in her own physician’s office. A doctor walked in, a man of about 40, sandy-haired and gentle-looking. “Hi,” he said. “I’m Dr. DeVore.”

He studied his screen and confirmed that the right kidney looked inflated. He could not say why, or what it meant.

Barbara felt scared. She was not sure she wanted to go on with the pregnancy. Her boy had been born normal. She hadn’t realized all that this fetal medicine involved, the problems doctors now could detect.

Recommends Amniocentesis

DeVore recommended an amniocentesis, so they could tell whether the kidney problem was connected to larger chromosomal problems. She agreed.

Barbara would be 23 weeks pregnant when the results came back in two weeks, just at the outer limit for a legal abortion. She would have to decide immediately.

Those two weeks were a hard time for Barbara.

“It’s hard to make a decision to take a life, or to take the chance of having a severely retarded baby. No one can be absolutely sure. I couldn’t talk to anybody. My husband doesn’t say much, he keeps to himself. I just could think to myself.”

It didn’t help that Barbara could feel the fetus moving inside her. Most start kicking at 18 weeks, and this one was already 21 weeks. She could also see the fetus, rolling and waving on the ultrasound screen.

Barbara and her husband finally decided they weren’t going to continue the pregnancy if the amniocentesis came back bad. They just couldn’t handle that.

Test Came Back Normal

On her second visit to the Genetics Institute, DeVore told her the kidney was getting larger. He believed there was a cyst, a sort of pseudo tumor, growing inside the organ. He also told her the amniocentesis test had come back normal. The chromosomes were OK.

They still had time to stop the pregnancy anyway, what with the bad kidney.

Barbara talked to DeVore and the nurses and the counselors. She knew she couldn’t get a guarantee, but the more she heard that the left kidney was good, the more she started thinking, it’s really not worth it to take a life.

When she returned to the Genetics Institute for a third visit, however, DeVore seemed more concerned than ever. The kidney had grown still bigger, so big it was pressing up against the fetus’s chest, compressing the chest wall, stunting the lungs’ development, causing the heart to start failing.

On his screen, DeVore could see the ominous black patches around the heart that indicated fluid accumulation.

Sent Her to Colleague

DeVore sent her to his colleague’s office at the Women’s Hospital in the LAC-USC center. Barbara walked down drab winding hallways to a small crowded office on the fifth floor. A hefty sort of man with dark hair, brimming over with energy, sat barking into a telephone. “I’m Larry Platt, I’ll be right with you,” he said.

Platt stared at the image on his ultrasound screen and considered.

He was well aware of the baby he once saved, only to have it born with chronic kidney failure. He recalled also the fetus that got better on its own, and the one where he drained the fluid and the baby was born in fine condition.

Who knows what would happen this time? Platt thought. The baby might end up with all kinds of complications and problems. It might end up with chronic dialysis. It could die when he put a needle through the mother and started poking. Maybe it’s better to let it go into heart failure and die in utero.

Spelled Out the Risks

Platt chewed on the matter, but not all that much. It was not in his nature to let the baby die.

Platt explained all this to Barbara and her husband. He and his colleagues spelled out the risks and options. They called in a pediatric urologist to explain what the baby most likely would be like, with one functioning kidney.

Barbara and her husband asked questions.

Would their baby be retarded? What kind of physical limitations would they have to place on the child? Barbara’s husband, taciturn by nature, spoke up. Could my son play football?

The doctors and counselors knew they were walking along a fine line. They knew that they, with their tests and diagnoses, were interrupting a desired pregnancy. This was not a couple who started out wanting an abortion. Words were chosen carefully.

Growth Could Be Stunted

It was possible that growth could be stunted. It would not be a good idea to play football, because he had only one kidney to risk getting kicked or kneed. But there are many people walking around with just one kidney who survive and live normal lives.

Barbara would have liked some precise figures and percentages. She knew she was not getting real definite answers. But, listening to Platt, her fear began swinging over to optimism.

“I knew my baby wouldn’t make it if we left him alone,” Barbara said. “I knew this was not a common cold. I was very scared, but Larry was great. He made me feel confident. I trusted him. He is incredible.”

Platt went after the bad kidney late one spring morning. Barbara, awake, stared up at nine doctors and assistants. The technique he used to drain the kidney did not seem much different from amniocentesis. Platt guided a needle through her to the fetus, watching on his sonar. She followed the fluorescent tip of the needle.

Bad Kidney Shrank

She could not believe how Platt just went right to the kidney with no problem at all.

The baby was in perfect position, Platt would say later. I would have to have been blind to miss something so big. Anyone could do that. Don’t make me into a hero.

One week later, Barbara returned to Platt’s office. Together, they looked at the ultrasound machine. The bad kidney had shrunk to a third of its inflated size, from six to two centimeters.

Chemical tests, Platt advised Barbara, showed a high sodium level, which indicated the kidney was not functioning well.

“That’s fine, as long as the other kidney is OK,” Barbara said.

Platt spoke precisely, choosing his words carefully.

“There is nothing to indicate a problem with the other kidney,” he said.

Barbara stared at the sonar screen. A veteran by now of ultrasound, she knew how to look at the blurred images. The fetus was 26 weeks old. She could see the heart beating. She could see the eyes, the nose, the mouth.

Barbara laughed out loud, and waved at her baby.

The story should end there, but it does not.

In early September, Barbara gave birth to a full-term, seven-pound boy. He looked perfectly healthy, but he was not.

The inflated right kidney, as diagnosed, was essentially nonfunctional. The left kidney looked structurally normal on the sonar screen, but tests showed an elevated level of waste products. The baby’s chemistry was askew. Perhaps there was something functionally wrong with the left kidney, something the ultrasound could not see.

Kidney Might Heal

The left kidney might have been damaged by the growing cyst, before Platt operated months before. Or it might have developed abnormally. Perhaps the problem was reversible, and nature would heal its own mistake. Perhaps the baby was destined for kidney failure, dialysis and a possible transplantation.

Barbara’s emotions swung from fear to confusion. Platt felt surprised and depressed, but he told himself this outcome would not make him gun-shy. This baby would likely not have survived without his intervention. He would not hesitate to give patients information in the future. This experience would just add to the knowledge he could share.

Then, as the days passed, the infant’s chemistry seemed to improve. But a biopsy on tissue from the left kidney indicated an inflammation, an infection. The baby went home, still ill but possibly on the mend. The doctors simply did not know. Final answers would not come for weeks or months. Barbara, confused but hopeful, still thought the fetal doctors were wonderful. If she had known about the left kidney’s problems, she would not have had the baby, but now she was glad he was born.

“We don’t know how this will end up,” Platt said recently. “We did what we had to do. It’s frontiers. When you cross frontiers, you don’t always know what’s in front of you.”