Pregnant, With Unexpected Grief

A short generation ago, mothers weren’t privy to the goings-on in their own wombs. Pregnancies often arose and miscarried, undetected. Women felt, but didn’t see, the movement of their future progeny. They guessed at their genders and talked to dreamed-of children through the skin of their bellies. They drank and smoked. They prayed for the best, and they got what they got. In a way, they were lucky.

“I think people were much happier then,” says Carol Archie, a doctor of maternal fetal health at UCLA. When they lost an unborn child--one they never had a chance to meet through sophisticated probes and shadowy pictures--it was so much easier. But, she says, advances in medical science “give women today a whole lot more to grieve than their mothers had. That, in some ways, is not a good thing.”

The same technology and testing that offer a new window into the health of a fetus may also lead doctors to give mothers an array of dire predictions about their future baby’s health. And when test data are ambiguous, doctors may or may not confess their own uncertainty about what they’ve seen. This year, one defiant Los Angeles mother gave birth to a healthy child although multiple doctors had advised her to abort, based on early ultrasound information.

The parental psyche reels with the information presented by ultrasounds, MRIs, CT scans and over-the-counter pregnancy kits. Couples who used to bond with their children when they were first placed in their arms now carry fetal ultrasound images in their wallets. They attach their imaginations and dreams to life at its most tentative--the eggs in the petri dish, the just-confirmed conception. And if prenatal testing suggests disorders, they’re asked to make decisions for which even an advanced course in medical ethics could not prepare them.

Medical science unquestionably has reduced rates of maternal fatalities, increased survival rates for premature babies, given infertile women the chance to reproduce, even corrected some fetal abnormalities through in-utero surgeries. But just as often, the knowledge it produces announces loss, and the choices it offers are anguishing. When the technology that seemed to promise a blessing--a healthy child--cannot, the emotional cost can be unexpectedly steep.

It was New Year’s Eve and Matt and Meghan Ruona had invited a group of friends to their beach house to ring in 2001. With everyone assembled, Matt looked over at his wife. Two months earlier, over-the-counter pregnancy tests had confirmed her pregnancy. That night she was just past the three-month mark, unperturbed by fatigue or morning sickness. New Year’s seemed like the perfect moment for an announcement. “[Matt] was just about to stand up and tell everyone when I pulled him back down,” says Meghan, then 35. “Something told me not to.”

Days later, on Jan. 3, a routine ultrasound failed to detect a heartbeat. As a slightly older mom, Meghan knew she was at an elevated risk for miscarriage and felt prepared. She wondered, frankly, if she would even care. Instead she was taken aback by the thunderclap of grief that came after an expressionless doctor looked at the ultrasound and said, “This baby is dead.”

“I left [the office] and I fell apart,” she recalls. She and her husband sat in the living room and cried.

Had Meghan Ruona conceived in her mother’s era, she suspects she would have celebrated the new year no wiser than her friends. “It would have been confusing as to why I didn’t have my period. But because I had no symptoms, I would never have known,” she says.

Because many women are waiting until their late 20s, 30s and even 40s to have children, the number of miscarriages today is greater than a generation ago, says Joshua Copel, director of high-risk obstetrics at Yale University School of Medicine. In 1999, the Centers for Disease Control reported 900,000 miscarriages in the United States, a number that includes only reported miscarriages and no vanishing twins.(Ultrasounds have revealed that a surprisingly high number of single births begin as twin gestations before one of the pair “vanishes,” dying or being absorbed by the other.) Archie suspects the true number of miscarriages could be 50% or higher than the number of live births.

Is this a cause for concern? Copel says it is not. The high percentage is largely due to an increase not in occurrences, he says, but in diagnoses.

Even so, the frequency of miscarriages can sound alarming, especially because women often keep quiet about them. It wasn’t until her own that Meghan Ruona learned that five of her 10 closest friends had miscarried too--as had most of their mothers. At one apartment complex in Santa Monica, female residents lost six pregnancies on their way to giving birth to 13 healthy babies.

The increase in pregnancy diagnoses and awareness of miscarriages has given rise to support groups for parents. Copel, as a young doctor, was dragged to one of them and “given an earful” from mothers about the often cold treatment from doctors.

“That made me sensitive to the need to have patience,” he says, and to let a woman who had miscarried know “that I knew she had actually lost a baby.” Miscarriage, he says, “can be as emotionally devastating as losing a full-term child.”

Jane Borman has spent the last 20 years watching as advances in reproductive technology have given parents new reasons to grieve. Borman, 62, is a staff member at a St. Charles, Mo.-based national support group for pregnancy and infant loss called SHARE. She lost the first two of her six children to premature birth more than 30 years ago and has been working with grieving parents since.

She finds her own experience didn’t necessarily differ from that of parents trying to come to term with very early-stage miscarriage. Some parents, she says, begin to bond with embryos in petri dishes during in-vitro fertilization. They then mourn those embryos that don’t survive.

That may stretch an observer’s credulity. But, Borman says, “It’s not the loss of the tissue, it’s the loss of the picture of the baby.” Even in the extreme petri dish example, she says, “It shows that a mother’s love and attachment is the base for everything. For so many, they are on the path to becoming a mother. To be a mother means to take care of this developing baby.” At every stage in the process.

Feelings become more complex when the use of new technology pulls parents into delicate decision-making about the health and survival of developing fetuses. Here, the language of distance is used--there’s less talk about babies, more talk of fetuses, and “termination” or “reduction” replace “death” or the dreaded “abortion.” All in the name of increasing the chances of a healthy child.

Shannon Thyne, an assistant professor of pediatrics at UC San Francisco, and two of her friends went through an ordeal late last year that provides a microcosm of the confusing new world of childbirth. One of the friends, Hilary, who is 35 and asked that her last name be withheld, had been trying to become pregnant for two years. To that end, she had begun taking fertility drugs that increased her chance of carrying multiple fetuses. Knowing Hilary could end up carrying triplets or even quadruplets, Thyne had a talk with her friend.

“I told her, ‘Promise me, if you’re having more than two, promise you’ll think about reduction,’ ” Thyne recalls. This refers to selectively ending the life of one of the fetuses to promote the health of the others.

Thyne told Hilary that while twins stand a 95% chance of a healthy birth, those odds drop to 75% for triplets who are more susceptible to birth defects such as blindness and cerebral palsy.

Eventually, Hilary opted to inseminate in a month when the odds of a multiple pregnancy were high because drugs had prompted her to produce five eggs; the chance to finally conceive was too powerful. “I wanted to try because I was so desperate,” Hilary said.

The result: twins. Or so her first doctor said. On a trip home to Los Angeles last Thanksgiving, an elated Hilary and her mother got together in Beverly Hills with another friend from high school who is now a Los Angeles obstetrician and gynecologist. “I said to her, ‘Hil, let’s go to my office and I can show you and your mom the babies,’ ” recalls the obstetrician, who asked that her name be withheld. The women watched as the ultrasound came into focus. Not only two, but a third fetus emerged. The celebratory mood turned dark, especially for Hilary’s husband. “This was his worst nightmare,” Hilary said.

The three girlfriends and Hilary’s husband talked over the options. He wasn’t comfortable with selective reduction. Through much soul-searching, the couple created a new vocabulary to describe their different feelings. Hilary says, “His ‘life instinct’ was to try to protect as much life as possible. My maternal instinct was to protect these two babies.”

Hilary’s girlfriends brought their own sets of expertise. The obstetrician, who has two young children, , intimately knows the risks of pregnancy. Thyne, who cares for babies once the umbilical cord is cut, understands it from the perspective of a pediatrician who hopes to have her own children.

Eventually the couple decided to selectively terminate one fetus. Before this is done, a preliminary test checks the fetuses for chromosomal abnormalities. In this procedure, a long, thin needle is inserted into the womb to remove a bit of tissue for testing from the placentas of two of the fetuses. If both were fine, the third would be terminated. A short while after this test was conducted, however, and before the results had come back, one of the fetuses died. The test could have caused it, or the miscarriage could have been caused by something else.

“It was almost like a blessing in disguise because we didn’t have to make the choice,” Hilary says. “It had been taken out of our hands.”

A boy and a girl survived. Their parents gave them names. Even on the ultrasound images, they seemed to be developing personalities.

When one fetus in a multiple pregnancy dies, however, the death can threaten the others. A blood clot can travel from the deceased fetus to the survivors. Or the test itself can cause an infection.

No one knows for certain what happened. But, in December, the doctor monitoring an ultrasound became “more and more silent and more and more worried-looking,” Hilary said. The two survivors had died too. The last days before Christmas, Hilary went about her holiday tasks, knowing she was carrying dead babies. When she finally miscarried--on Christmas night--she lost a tremendous amount of blood during an emergency surgery.

“It was so hard because you bond with them,” she says. “When it was all finally over .... I think I went into this denial phase. And then I just crashed. I still have terrible nightmares. It’s a sense of not being able to take care of anything. I think I’m grieving really, really deeply. I guess it’s going to come in waves and waves and waves.”

Her two doctor friends grieved along with her. “It was hard. I felt so, so bad,” the obstetrician said. “I also felt guilty because I have these two beautiful children at home.” Thyne regrets she insisted her friend consider reduction, despite the substantial risks.

The miscarriage demonstrates that even the best medical knowledge, delivered from caring friends, can’t guarantee a happy outcome in the game of roulette that is childbearing. In the end, the experience drew the three women more closely together. Hilary says she feels fortunate her friends served as her “bioethics committee.”

Most women go through difficult pregnancies without this kind of help.

“The [prenatal] counseling is very inadequate in this country,” says medical ethicist George J. Annas, a professor at the Boston University School of Public Health. “Most parents have to slug through this on their own.”

Genetic screening will increasingly present new choices for mothers in search of The Flawless Child. News accounts earlier this year told of a Chicago woman who is at risk for early-onset Alzheimer’s disease. She had her eggs screened to ensure her baby did not carry the same gene mutation as she does. “Now with the genome, we’re all going to appear sick,” Annas says.

Barbara Katz Rothman, who wrote the book “The Tentative Pregnancy: How Amniocentesis Changes the Experience of Pregnancy,” (Viking Penguin, 1986) argues that all these tests encourage women not to fully commit to a pregnancy. She suggests that the new technologies aren’t always liberating.

But in some cases, even when the news they offer isn’t good, the technologies allow for a different kind of liberation.

Jane Lebak, from Nashua, N.H., says early testing allowed her to prepare for the coming death of her baby girl. An ultrasound early in her pregnancy revealed a fetus developing without a brain, a condition known as anencephaly. Anencephalic babies typically live only an hour or two after birth. Lebak, who is Catholic, named the fetus Emily Rose and decided she would carry her to term.

When doctors treated her choice with condescension, she switched to supportive nurse midwives. Lebak gave birth in July 2000 with three sets of grandparents present. The baby’s small, bluish body was wrapped in a comfortable white blanket. A soft hand-crocheted cap covered her head, which had stopped developing immediately above her eyes.

The family snapped through rolls and rolls of film, and videotaped Emily Rose’s single day with them. In a photograph from that day, Lebak is shown holding her daughter with a smile, slightly tinged with something that looks like despair.

“I got a chance to experience unconditional love on the giving end,” Lebak says by telephone. In the background, her new baby girl, born 10 months ago, cries energetically. “If I live to be 80, those extra months weren’t much to give my baby. If I hadn’t had the routine ultrasound, I couldn’t have planned everything I did.”

Perhaps optimism is a natural precondition of motherhood. Few experiences are more deeply rooted in hope than a long-dreamed-of pregnancy. Even Hilary can’t bring herself to regret hers, despite the outcome.

“Even though you know exactly how many follicles you have and exactly when you are ovulating, there is still a sense of the miraculous,” she says. “What you give up in total mystery, you get back in this narrative process.”

She and her husband recently learned that Hilary is pregnant again.