The first time Patricia McCreary became pregnant, she had a baby.
"I look at that now as this naïve bliss time, when I thought pregnancy meant a baby," said Ms. McCreary, who lives in Seattle.
But five years and four miscarriages later, she said, "When I hear someone say, 'I'm pregnant,' to me it's like, fear and dread and when am I going to get my heart smashed."
The agony of infertility for thousands of American women is not that they cannot conceive, but that they cannot hold on to their babies beyond the first few weeks of pregnancy - and no one can explain why.
Doctors say that as many as 3 or 4 percent of couples who try to have children suffer from what doctors call recurrent pregnancy loss, in which women younger than 40 experience three or more consecutive miscarriages with the same partner.
A fourth of those couples, doctors say, will probably remain in the "don't know why" category. Researchers at the Centers for Disease Control and Prevention estimate that of the 6.23 million pregnancies recorded in the United States in 1999, 1 million ended in miscarriage. A 25-year-old has a 15 percent chance of miscarrying. By 42, that figure exceeds 50 percent.
Miscarriages, though common, are rarely discussed. Nor have they been much studied until recently.
In most women, miscarriages occur because an embryo with genetic abnormalities is not viable, and that is also true for some losses among women who miscarry often. In those cases, women can opt for in vitro fertilization and pre-implantation genetic diagnosis. That ensures that only embryos deemed genetically normal are implanted in the uterus.
Other causes of recurrent pregnancy loss include anatomical abnormalities in the uterus, diseases of the immune system, hormonal imbalances and problems with blood clotting. Infections and, more rarely, chromosomal abnormalities in a parent, can also be factors.
Patients and doctors say that treatments can differ wildly from practice to practice and that there is only a limited consensus on how to address unexplained recurrent pregnancy loss.
"Doctors forget to order the very basic tests, check the uterus," said Dr. William H. Kutteh, a specialist in immunology and reproductive endocrinology at Fertility Associates of Memphis. Over half the women Dr. Kutteh sees with recurrent pregnancy loss, he said, have never been given a cheap, simple test for insulin resistance, although that problem is associated with higher miscarriage rates.
Even a treatment as venerable as progesterone, a hormone vital to a healthy pregnancy, is divisive. Some doctors swear that it helps. Others argue that it does nothing but postpone an inevitable miscarriage. New research suggests that very high doses of progesterone may be effective in some cases, probably a result of the hormone's immunosuppressive effects.
"How many patients do we save from miscarriage with progesterone supplements?" Dr. Alan B. Copperman, director of reproductive endocrinology and infertility at the Mount Sinai Medical Center, asked. "Not that many. Do we do it routinely? Sure we do. It's a mostly harmless, inexpensive treatment, which a lot of patients go on. But it probably doesn't save that many pregnancies."
Dr. Kutteh said that when he was a student 15 years ago "there was no training on pregnancy loss."
"It's just one of those areas where there wasn't much known," he added. "And there were not many experts, and there was not a consensus on what to do."
Now, he said, more than 25 training programs turn out about 50 specialists a year.
Despite exhaustive testing to find a cause, many miscarriages go unexplained. This was the case for Ms. McCreary and for Isabel Letsch, 25, of Baltimore, who has charted the reproductive history of her three miscarriages after failed fertility treatments in a Web log, Isabel's Journal.
"It's just a big mystery," Ms. Letsch said. "My doctor has given up hope and told me it's because I'm overweight."
No data support that diagnosis, she said, adding:
"I know I can get pregnant. I've never got as far as to see a heartbeat. We know it implants. It just doesn't develop any further. We're just kind of frustrated."
McCreary said she received conflicting advice from doctors in the same practice. One advised trying in vitro fertilization with pre-implantation genetic diagnosis. Another expressed skepticism about IVF for women who repeatedly miscarry.
“Two people in the same office, and I really respect them both,” McCreary said. “They have no idea. There’s nothing they can point to except for my age.”
Dr. Aydin M. Arici, director of reproductive endocrinology and infertility at the Yale School of Medicine, said, “Everybody would agree there’s no agreement.”
Recurrent miscarriages have many causes, Arici said.
“For two-thirds of the known causes,” he said, “there is a specific treatment. Then you have about 40 percent where you don’t know exactly what has caused it. So there are some empirically unproven treatments out there that are highly debatable.”
One theory explaining why some women repeatedly miscarry is that the immune system somehow fails to recognize and protect a pregnancy, and instead mounts antibodies to attack it.
This idea has led doctors to try two treatments intended to restore normal immune function. One is intravenous immunoglobulin therapy, a blood product pooled from thousands of donors and used to regulate abnormal responses of the immune system. The other is lymphocyte immune therapy, which uses blood from a woman’s partner to prompt her immune system to recognize a pregnancy.
The immunoglobulin therapy is being studied by Kutteh and Arici. But the lymphocyte treatment, promoted on the Web as a possible cure, has been restricted by the Food and Drug Administration because of fears that it in fact increases miscarriages.
At least one American doctor is offering the treatment in England, and some women are traveling to other countries for the therapy.
“The theory is wonderful, but the data never really showed that it worked,” Kutteh said.
For two years, Kutteh has run a controlled clinical trial of the immunoglobulin therapy in a subgroup of women with unexplained recurrent miscarriages who have given birth at least once.
Arici has joined the trial, begun by Dr. Mary Stephenson at the University of Chicago, and early results seem to indicate a possible benefit to this specific subgroup.
The doctors note that the studies are complicated by the fact that even without treatment, women whose recurrent miscarriages cannot be explained have a 60 to 70 percent chance of a successful pregnancy.
“About 40 different treatments over the past century claim to be successful, and some sound OK,” Arici said. “But when you look at them, all of them claim about a 70 percent success rate. When you take this unexplained group and give them tender loving care, contact, reassurance, about 70 percent will carry to term.”
Carol Turner, a nurse practitioner in Westport, Conn., had many tests after two ectopic pregnancies and several miscarriages. No underlying cause was found.
Yet, all three of her daughters were born without help and after unsuccessful fertility treatments. The third was conceived after in vitro fertilization resulted in yet another failed pregnancy.
“We had an exit interview,” Turner said, “and the doctor said: ‘You’re not a candidate, I’m never doing that again to you. You have a zero percent chance. You will never be pregnant again.’ And a month later, I got pregnant on my own with my last baby, who is very healthy.”
Faced with the prospect of doing nothing except waiting and hoping for the best, many couples seek out expensive experimental treatments, sometimes found on the Internet.
“When women are going through this, they’re desperate to try anything,” said April R. Simonoff, a vice president of the Long Island chapter of Resolve, who had unexplained miscarriages.
McCreary, who is trying to decide whether to keep trying to have another child, found some solace when she discovered Chez Miscarriage, one of several infertility Weblogs that are wickedly funny, as well as wise, mixing raging profanity and sisterly support in fairly equal measure.
“I just felt less alone,” she said.
Allison Rosen, a therapist who treats people with infertility problems and is editing a book of essays on the topic, said: “People don’t understand the deep connection to the unborn child, and they don’t understand it’s the death of what feels, to the potential parents, like a real person.
“The grief is so silent. We don’t have rituals mourning a miscarriage. So the pain is isolating.”
Excerpted in part from New York Times
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