FORTY-THREE

How Technology Has Changed the Way We . . . Have Babies

BY MARCELO PRINCE

November 13, 2000

The first time Mark Sims found his newborn daughter, Molly, in the intensive-care unit this February, all he could see was a tiny foot sticking out from under a pile of blankets. So he tickled her foot.

And Molly did something extraordinary—she jerked it back.

It seems unremarkable until you find out that four months earlier, Mr. Sims and his wife, Christa, learned the child they were expecting suffered from spina bifida, a birth defect that often causes paralysis of the lower limbs. Desperate—but committed to having the baby—the Rainsville, Ala., couple turned to an experimental procedure in which surgeons open the womb, operate on the fetus and then place it back inside to continue the pregnancy.

Surgeons successfully grafted a piece of skin to cover the baby’s exposed spinal column. Now Molly is nine months old. And the effects of the disease have so far been greatly diminished.

The Simses’ story highlights just how much science and technology have reshaped having a baby. For much of this century, obstetrics was seen as a backwater of medicine. Then, beginning in the 1960s, technology began to make its way into the field. Doctors began to use ultrasound—the same technology used to find submarines in World War II—to examine babies in the womb. In the 1970s, genetic gymnastics let infertile couples conceive.

In the intervening decades, there have been numerous other tests and treatments for unborn children, most recently fetal surgeries and genetic therapies, which have left obstetricians testing the limits and ethics of their field. And, in the past few years, parents have started using technology themselves, getting information and support from the Internet—even broadcasting births online.

“From conception all the way through birth and then survival after birth, it’s hard to find an area where technology hasn’t had an impact,” says Donald R. Mattison, medical director of the March of Dimes, the White Plains, N.Y., charity. “You might even argue the process of reproduction, as fundamental as it is, has become technology-laden over the past several decades.”

Technology has plenty left to solve, of course. The rate of premature delivery (37 weeks or earlier) has steadily risen over the past 10 years and is now nearly 12%. Despite cutting-edge prenatal diagnoses and great strides in salvaging smaller babies, “we still haven’t made a whole hell of a lot of progress in preventing those premature births,” says Richard Schwarz, chairman of obstetrics and gynecology at New York Methodist Hospital. Adds Dr. Mattison, “It’s a shame on the nation that we are so good at so many things and our ability to understand the causes of and prevent prematurity are so meager.”

Technology even creates a few new problems of its own. “It’s a blessing and it’s a curse,” says Gayle Peterson, a family therapist in Berkeley, Calif., and author of books on family health. She notes that new technology often leaves couples facing decisions for which they are not emotionally prepared, such as deciding whether to have multiple births or selectively abort when several implanted eggs are fertilized.

Technological advances also have created unrealistic expectations among many parents. “Women expect a perfect baby all the time,” says Patricia Dunn, an industry consultant and former neonatal nurse. “That’s something we can’t guarantee, even with the best technology.”

John Repke, chairman of obstetrics and gynecology at the University of Nebraska Medical Center in Omaha, agrees. “We’ve reduced maternal and infant mortality to such a low degree that an adverse outcome becomes so rare, people really have a difficult time accepting this is still part of the human condition,” he says.

With that caveat, here’s a look at some cutting-edge developments that are changing pregnancy in America.

The area that has captured the most interest in recent years has been prenatal screening, which involves testing fetal cells, amniotic fluid or placental tissue to detect fetal abnormalities.

Currently, diseases transmitted as single-gene defects, such as cystic fibrosis, sickle-cell anemia and Tay-Sachs disease, can be diagnosed early in pregnancy. Screening tests also exist for Down syndrome, a common chromosomal disorder, and propensity for breast cancer.

Still, “for most genetic disorders, the only way to know if you are at risk is if you’ve had the tragedy of having a child” that is affected, says Mark Evans, chairman of obstetrics and gynecology at Hutzel Hospital in Detroit.

But the mapping of the human genome, completed this summer, promises to change that, opening the door for early diagnosis of thousands of genetic or chromosomal disorders—from mental disorders to inherited heart disease. These tests don’t even have to come during the pregnancy itself; parents can be tested before they conceive to see what diseases they are likely to pass along.

Moreover, experts say large-scale testing in the U.S. isn’t far off, as information about the genome is collected and disseminated. “There is a very high likelihood that by next year we’ll see cystic-fibrosis screening being offered for all pregnancies in the first or second trimester,” says Sherman Elias, chairman of obstetrics and gynecology at the University of Illinois at Chicago.

The tests themselves may also be made easier on the mother. Researchers are currently working on technology that would make it possible to collect the genetic fetal material for these tests from simple blood samples rather than today’s invasive techniques—usually inserting a needle to collect amniotic fluid (amniocentesis) or placental tissue (chorionic villous sampling).The new technique involves isolating fetal cells that have been found to float in the mother’s blood.

However, advances in genetic testing have raised serious ethical questions. The far-off fear, of course, is genetic engineering—the creating of “designer babies”—and what it means for society. But in the meantime there are practical concerns. For one, the ability to screen for diseases has far outpaced medicine’s ability to treat these conditions, leading to difficult choices. Will a fetus found to have a breast-cancer gene be aborted because there’s a chance it will develop that disease later in life? And if it is born, will it be denied health insurance? Those difficulties are compounded when you consider that these tests only indicate risk, and don’t indicate whether an individual will actually come down with a disease.

There are other concerns, such as cost. The tests can run from a few hundred to several thousand dollars, and may not be available to people in poor areas.

“Genetics is growing by leaps and bounds, growing faster than our ability to think about the moral issues raised,” says Dr. Mattison, echoing a sentiment raised by leading bioethicists.

The advances in genetics and screening are also driving demand for prenatal therapies and treatments, such as in utero surgery. Both critics and advocates agree that such surgery, which often results in premature delivery, is risky and should be reserved for the sickest of the sick.

In this procedure, doctors make an incision in the woman’s abdomen, remove the uterus and place it on her torso. They then drain the amniotic fluid and operate on the fetus. When the procedure is complete, surgeons replace the baby in the womb, and the child is delivered some weeks later by cesarean section.

Surgeons at just three U.S. medical centers regularly perform invasive fetal surgery. Doctors at the University of California at San Francisco and Children’s Hospital of Philadelphia have used the procedure to correct a handful of rare, lethal disorders, removing fetal lung tumors, repairing herniated diaphragms and clearing urinary obstructions. And, for the past three years, teams at Children’s and at Vanderbilt University Hospital in Nashville have been performing open fetal surgery to decrease the handicaps caused by nonlethal neural-tube defects, such as spina bifida.

Invasive fetal surgery was pioneered by Michael Harrison, the director of the Fetal Treatment Center at UCSF, who used it in 1989 to correct congenital diaphragmatic hernia, a condition in which organs slip through a hole in the fetal diaphragm, crowding the lungs and stunting their growth.

But the future of prenatal surgery may lie in minimally invasive techniques. In the past five years, Dr. Harrison and others have experimented with such procedures using new endoscopic tools and techniques.

N. Scott Adzick, director of the Center for Fetal Diagnosis and Treatment at Children’s, says he and others are now working on optical and navigation devices that would make it possible to operate earlier in pregnancy. Joseph Bruner, director of fetal diagnosis and therapy at Vanderbilt, says new robotic endoscopic machines with foot pedals, joysticks and 3-D imaging promise to improve outcomes.

“We’re probably on the threshold here where those with spina bifida will no longer be treated by doing open-surgery techniques,” he says.

Although the potential to treat and possibly correct disorders early in pregnancy is an area that holds much promise, these minimally invasive procedures are still rare and largely unproven. A nationwide clinical trial is expected to get under way next year to determine the efficacy and long-term outcome of these procedures.

Ultrasound, which uses sound waves to create images of fetal organs, has helped doctors observe fetal development and diagnose abnormalities since the 1960s. Over the years, faster microchips and better software have led to enhanced sonography, including higher resolution and introduction of color images that show the direction of blood flow. These improvements allow doctors to make diagnoses earlier and with greater confidence, says Lawrence Platt, chief of obstetrics and gynecology at Cedars-Sinai Medical Center in Los Angeles. Although not required, ultrasound is considered safe and used in roughly 80% of pregnancies.

More recently, 3-D ultrasound, which provides renderings of the fetal surface and structures, has come on the scene. Its proponents say it assists in detecting certain conditions, including cleft lip and palate, brain malformations and skeletal disorders. Sue Moore, a perinatologist at St. Anthony’s Medical Center in St. Louis, says the 3-D machine may also prove helpful in examining the placental surface. But regular ultrasound remains the standard of care, and some maintain it’s not clear that the clinical benefits of 3-D are commensurate with the higher cost.

There are other drawbacks, critics say. For one thing, the 3-D procedure takes much longer than a simple 2-D rendering, and fetal motion will blur the pictures. There’s also a learning curve—interpreting the 3-D images is a different skill than reading the flat pictures.

One of the biggest challenges facing obstetricians is knowing whether there’s a problem with the fetus during labor. Since the early 1970s, doctors have relied principally on electronic fetal monitoring to measure fetal heart rate by placing electrodes on a woman’s abdomen.

Frank Boehm, an obstetrician at Vanderbilt, says that in about one-third of all labors, doctors encounter a “nonreassuring fetal heart rate” and must decide whether it signals fetal distress. In many cases, physicians choose to perform cesarean sections that later prove unnecessary rather than take a chance, Dr. Boehm says.

But a new device, called a fetal-pulse oximeter, might eliminate much of that uncertainty. It lets doctors directly measure the oxygen saturation of the fetus by placing a soft sensor against its cheek.

In clinical trials that Dr. Boehm and others performed, the device reduced the number of c-sections by half. The device was cleared by the FDA in May, but is still only sporadically available. Critics say its utility remains to be seen, and some doctors say they would rather trust their instincts and perform a c-section than rely solely on a new machine. “It’s got some worthwhile attributes, but does it offer anything truly advantageous [compared with existing monitoring]?” asks Dr. Repke of the University of Nebraska.

Technology doesn’t just affect pregnancies in the doctor’s office or delivery room. Over the past few years, the Internet has had a tremendous impact on the childbearing process—how patients relate to their doctors. Armed with printouts from online medical textbooks and recent drug-study results, patients are discussing these new technologies with their physicians.

Many outfits, including iVillage.com Inc., New York; and Women.com Networks Inc., San Mateo, Calif., have sites tailored to pregnant women or new mothers. They offer everything from chat sessions on postpartum depression to child-cost calculators; from online week-by-week journals to baby-name lists.

“Without the Internet, it was almost impossible to find someone else who was due the same week as you” to share experiences and get advice, says Nancy Price, an at-home mother who’s expecting a fourth child and is president of Myria Media Inc., which operates several parenting sites, including ePregnancy.com.

The Web is not just a resource, but a tool. Some couples are using the Internet to broadcast videos of their birth; others are sending e-mail updates to family members from laptops in delivery rooms. Then there are technophile parents using services like babypressconference.com, which lets new parents host real-time videos from hospitals at no charge, or creating personal Web sites to announce births. Take Brad Sinrod, founder of IPO.com Inc., New York; and his wife, Lauren, who had a Web site up within a day of the birth of their daughter, Emily, and included the address in their mailings.

“It’s a wonderful opportunity for bonding,” says Ms. Peterson, the therapist who also dispenses advice online. People are getting a lot of information on the Internet and support from others in similar situations, she adds. “But you cannot let a cyber-relationship compete [with] or replace real face-to-face relationships.”

And, indeed, with all the technology out there, science hasn’t touched every aspect of childbearing just yet. The majority of the nearly four million annual births in the U.S. are uncomplicated, and are unlikely to see much technology beyond a routine ultrasound.

“The actual act of giving birth hasn’t changed all that much,” says Karen Leinhauser of Narberth, Pa., who is pregnant for the 10th time. She has had five children and four miscarriages. “It’s still painful, still hard work, and the outcome is still beautifully unimaginable.”

Mr. Prince is a reporter for Dow Jones Newswires in New York.