"They told me the baby would probably die before he was born. So I did it because I wanted to have him,” says 20-year-old Doreen Shuya of Winnipeg. “So far, Matthew’s doing great. To me he’s just as normal as my other two kids.”
While Matthew Shuya may seem just a normal baby to his mother, obstetricians and pediatric surgeons in several North American centres think him a special child indeed. For what Shuya did to save Matthew’s life was to consent to an experimental operation when he was a 16-week-old fetus in her womb.
Last April at St. Boniface General Hospital in Winnipeg, obstetrician Frank Manning inserted a long surgical needle through Shuya’s abdomen, through the tiny abdomen of the 12.5cm-long fetus, and into the fetal bladder, which was grossly distended. He then slid a thin catheter through the needle, leaving one end in the ballooned bladder and the other opening in the amniotic sac. As the fetus grew, the urine was able to drain, creating enough amniotic fluid for the lungs to develop normally. When Matthew was born late last December, doctors removed the catheter.
“The baby’s prognosis is good,” says Manning.
“There’s a chance of kidney problems in the future, but it’s a very minimal risk. There’s no doubt in my mind he would have died without the surgery. The bladder was as big as the fetus.”
Although the Shuya case represents the youngest fetus in the world on whom surgery has been performed, the procedure is by no means unique. To date, and mainly within the past year, about two dozen drainage operations have been carried out on unborn babies—in several centres in the U.S. as well as Toronto and Montreal—at gestational ages of between 21 and 36 weeks. (A full-term pregnancy lasts 40.) The surgical needle has treated three problems: a blocked bladder, as in Matthew’s case; hydrocephalus, a condition in which excess cerebrospinal fluid en-
larges the skull and compresses brain tissue; and fluid buildup in the chest or abdomen.
But it’s too early to declare fetal surgery the latest miracle of medical technology. Even as the techniques are being refined, serious ethical questions haunt the surgeons. More disturbing is their success rate so far: more than half of the fetuses receiving surgery have died, either before birth or shortly after, almost invariably of causes reported to be unrelated to the surgery. “Every pregnant woman has this primordial fear of producing an abnormal child,” notes Manning. “I’m deeply concerned about creating a sense of false
optimism for those mothers. Fetal surgery may not be the solution.”
It is, however, the most dramatic aspect of a new area of medicine: treating the fetus as a patient. Doctors are now administering vitamins, enzymes, hormones, heart drugs and diuretics to fetuses with certain disorders, usually by prescribing them to the mothers. Experimentally, they are also injecting such substances directly into the unborn child, or into the amniotic fluid so that the fetus can swallow them.
But the established fetal treatment that led to the current operations is intrauterine blood transfusions. In the early ’60s New Zealand obstetrician William Liley developed the technique and, independently, Canadian pediatrician Jack Bowman applied it to save fetuses suffering an incompatibility of blood type with their mothers. Using X-ray guidance and a surgical needle, the physicians injected new red blood cells into the abdomens of such fetuses to replace cells destroyed by maternal antibodies. Even though a vaccine can now prevent this problem known as “Rh disease,” the technique is still widely used. Most .? - of the doctors attempt’ iE ing fetal surgery have g performed dozens of feil tal transfusions.
¡2 Locating the fetal o abdomen with X-rays z and a needle requires o skill. But without the > aid of an important S new tool—the ultra§ sound machine—locato ing the fetal bladder or 2 the centre of the fetal § brain with a needle would be unthinkable. The machine, which works with sound waves and to date appears to have no ill effects on mother or fetus, gives the surgeon a moving picture of the fetus. It can be focused either on the surface of the fetus or on the internal organs, and during surgery it guides the surgeon’s needle.
Even so, fetal surgery can pose some harrowing problems. Though mother and fetus are sedated, there’s always a slight chance the fetus might squirm, the needle might slip, or the uterus might be triggered into premature contractions. A more serious obstacle, however, comes well before the needle is
inserted: determining which fetuses would benefit from surgery and which should be left alone. “The worst tragedy would be to get a child to survive at birth but be left with chronic kidney failure,” says Dr. Michael Harrison, a San Francisco pediatric surgeon who has performed successful fetal bladder operations at the University of California Hospital.
Hydrocephalus is even more worrisome than urinary tract obstructions in this regard. Iain Bruce, developmental neurophysiologist at the Playfair Unit of Toronto’s Western Hospital, reports
that about 50 per cent of hydrocephalic infants also have other neurological problems that can produce mental retardation or death in childhood—problems that surgery cannot correct. Says Dr. Ronald Wapner of Thomas Jefferson University Hospital in Philadelphia, who delivered his first hydrocephalic surgical patient two months ago: “When it comes right down to it, you have to make the decision [to operate] as if the fetus were your own child.”
Most surgeons agree that better ways of diagnosing fetal abnormalities are urgently needed so that the babies who
are saved will not just survive but will lead normal, healthy lives. At present, abnormalities are discovered through ultrasound and amniocentesis (studying chromosomes from the amniotic fluid to determine genetic defects). Dr. Fredric Frigoletto of Harvard University, who performed the first fetal operation in 1979 and has done four since then, says ultrasonography is becoming so refined that brain function can be assessed by observing small fetal movements. But it’s essential, he believes, for hospitals offering fetal surgery to form multidisciplinary teams to make careful diagnoses of possible surgical cases. “All the evidence should be reviewed, time must elapse to make sure the problem is progressive, and the parents must be told the risks of the surgical procedure and the other options available to them.”
Currently, the criteria for choosing surgery vary among surgeons. Manning says he will operate to save those fetuses who appear to have a correctable problem and will clearly die without the surgery. Yet Wapner’s aim is to “minimize the damage to an abnormal child who appears will be born alive if you do nothing.” But almost all agree that one option is out: open-womb surgery.
Last April in San Francisco, Harrison opened the uterus of a pregnant woman, removed the 21-week-old fetus, surgically corrected the severely blocked urinary tract, and then placed the fetus back in the womb. “The baby did fine for the remaining three months of pregnancy,” reports Harrison. “We just didn’t get in early enough to prevent the damage that had already been done to his kidneys and lungs.” The baby died soon after birth.
Although open-womb surgery may be the only alternative to death for certain fetuses, the mother runs serious risks: premature labor during the operation, infection, or rupture of the uterus in subsequent pregnancies. Harrison, who
has performed two dozen similar operations in monkeys, believes his team is on the way to solving these problems. They have devised new surgical and suturing procedures, and have been using new drugs that control uterine contractions. Nevertheless, he says: “We need to be exceedingly cautious because the potential for doing harm is considerable. I’m just not sure yet whether open-womb surgery has a future.”
Others concur. “All it takes is one maternal death to make open-uterine surgery a very, very nasty business,” says Manning, who himself has done fetal surgery on nearly 100 primates. “It’s not an operation we’re contemplating in Manitoba at all.”
Compared to open-womb surgery, the drainage procedures may seem almost simple. Yet to medical researchers as well as surgeons, the future of the needle surgery is almost as uncertain. Neurophysiologist Bruce feels research should concentrate on basic fetal development and abnormalities, so that genetic counsellors can offer better information to parents considering continuing or terminating pregnancies. “Active intervention should wait until we know a lot more, ” he says. Likewise, Dr. Samuel Solomon, director of the endocrine laboratory at the Royal Victoria Hospital in Montreal, believes a safer, more promising endeavor is to develop better ways of treating fetuses with drugs and hormones. Abnormal fetuses, he feels, should be left in the hands of nature for now. “Fetal surgery is still at the experimental stage. Technically it’s all very feasible. But whether we should be doing it is another question,” concludes Wapner, even though 23-year-old Nancy Rowe, the mother of his first fetal surgery patient, is thankful and optimistic.
Like Doreen Shuya, Rowe couldn’t face an abortion when she learned that her baby, at 26 weeks in utero, was hydrocephalic. A nurse, Rowe appreciated the risks of the surgery, but she and her husband decided to do everything possible to increase their child’s chances for a normal life. In February, when her son was born, Rowe was more than satisfied. “My love for Danny is no different than it would be for a normal child. I don’t have any regrets about the things we did.”
The optimism of Shuya and Rowe makes one thing abundantly clear: as the ethical questions plague the surgeons wielding the needles, the impetus to continue operating on fetuses will come from parents. Abortion, or letting nature take its course, will now seem unconscionable choices to some parents as long as fetal surgery is available. Concludes Manning: “If fetal surgery saves only one or two babies a year, maybe it’s worth it.” 0
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