The only place where prenatal dex for CAH has been studied the right way--in a prospective, controlled, long-term trial--is Sweden. In mid-2012, the Swedish
research team reported that they had gone to their ethics board to tell them they were shutting
down their trial use. The Swedes have so far found 8 "severe adverse events" among 43 children exposed in utero. Problems among those exposed include
mental retardation (3 cases among the 43 children), memory problems, and growth disorders.
Not all those problems may have been caused by dexamethasone exposure, but the Swedish group concluded, "until larger and more conclusive studies are
published, we do not consider it ethical to initiate further treatment." They added, "We find it unacceptable that, globally, fetuses at risk for CAH are
still treated prenatally with DEX without follow-up." Meanwhile, the American Journal of Obstetrics & Gynecology has just published a review of the animal and human literature that concludes the intervention should not be used.
The doses of dex in IVF cases appear to be slightly lower and to start much earlier than those for CAH; the two interventions appear clinically different.
But the CAH findings give plenty of reason to be concerned about any first trimester use, especially outside of prospective trials. It is worth remembering that the terrible effects of DES were found almost by accident, when doctors
became aware of a cluster of young women with a very rare form of vaginal cancer. A mother of a girl with the cancer pushed doctors to consider the possibility that the cancer came from her daughter's
prenatal exposure to DES, and that mother turned out to be right.
When they were giving DES to pregnant women, doctors didn't understand how DES could affect fetal development. They found out the hard way. By contrast,
obstetricians use dexamethasone for CAH--and also sometimes use dex on fetuses at risk of being born prematurely--specifically because they know it
can impact fetal development.
What about Dr. Sher's claim that IVF treatment is just too complicated to allow a study of dexamethasone for miscarriage prevention? The infertility
specialist Dr. Kazer replies, "Such a study could certainly be designed, although it might be difficult to convince an IRB [i.e., ethics board] to approve
it, given the lack of biological plausibility regarding potential efficacy."
What did Susan's doctor tell her about efficacy and safety when he put her on dexamethasone? Nothing until she pressed him, several weeks into the
"treatment." At that point, she says, "The doctor had the nerve to tell me that they think the benefits outweighed the risks, but maybe I don't! I've never
been party to the discussion. How dare they make that decision on my behalf."
She wrote to me, "I can't understand why nobody is even questioning the use of this drug; in some respects I wonder whether women who go through IVF end up
having such low self-esteem that they don't have the confidence to question what the doctors say. They are 'grateful' that they are being treated and
therefore don't dare put a foot out of line. I know for a fact that is the situation in my clinic; you never question [the doctor] and if you do create a
fuss, then he won't treat you again." She added, "It's a very disempowering relationship."
Kari Christianson, Program Director of DES Action USA, was astounded when I wrote to tell her that dexamethasone is
being used for miscarriage prevention. She wrote, "what strikes me most about the horror of dex use is the vulnerability of not only a developing fetus in
pregnancy, but also of a mother (and a father) wanting to make the best decisions about a hoped-for child. But again and again, unproven and unsafe drugs
are available, offered and given to pregnant women without fully informed consent or understanding at a most vulnerable time. It is unconscionable. To
think that we have learned little or nothing in the over 40 years since DES health harm was brought to light is frightening beyond all reason."