In today’s installment of the Dex Diaries, we hear from Ellen Feder, PhD, an author of the JBI paper, the corresponding author of the Letters of Concern to the government, and Associate Professor of Philosophy and Religion at American University. Ellen writes here about her personal experiences—experiences which did not influence her decision to begin the dex work, but which she came to really understand as a result of the dex work.
Several weeks into what first appeared to be an uncomplicated twin pregnancy (to the extent that any multiple pregnancy is uncomplicated), a sonogram revealed potentially serious problems. I was referred to a high-risk specialist. He was not only very well regarded, but truly kind, and I trusted him completely. He took extraordinary care in each exam, deliberately explaining what was worrying and what reassuring, preparing my spouse and I for the lengthy stay in the neonatal intensive care unit (NICU) he thought likely for our babies. So when he told us that, because an early and indeed immanent birth would be necessary, injections of a steroid to help our babies’ lungs develop would help ensure their survival, we agreed without hesitation.
I am ashamed now to admit that I don’t recall asking any questions about risks that might be involved. And this even after it became clear, from the inordinate time it took the hospital pharmacy to dispense the syringes—one that day, and a second that would be administered precisely 24 hours later—that this was no ordinary prescription. But then, why would I hesitate to take the advice of a respected doctor I liked, trusted, and on whom my family depended? I think now that I must have signed some sort of consent, but I don’t remember doing so.
There are some studies about the long-term effects of exposure to betamethasone, the steroid I took. (Here and here, for example.) Given the daunting challenges that prematurity can bring, these are risks I probably would have assumed even if I had known about those studies. But looking back on my eager compliance, it is easy to identify with the women who have taken prenatal dexamethasone for CAH.
Mothers who have agreed to take prenatal dexamethasone believe they are treating an aspect of an illness for which their child is at risk. It's very important in discussions of prenatal administration of dexamethasone that we not lose sight of the fact that CAH is a serious, and sometimes life-threatening, disease. Although prenatal dexamethasone doesn’t cure or prevent CAH, the mothers who take it are worried that their fetuses may have CAH, so they’re thinking in terms of children who may need lifelong medical care. Rather than trying to “engineer” optimized children, parents who agree to take dexamethasone believe they are securing their children's health, which is their obligation.
It seems clear now that most parents whose children were exposed prenatally to dexamethasone were not informed about the risks they were assuming on behalf of their children. It is difficult for me to believe that if parents had been truly informed, and understood the risks, they would have chosen to expose their children to dexamethasone. In fact, in the course of our research on dex, I spoke with a researcher trying to launch a prospective long-term study who found that, once parents were actually informed about the risks and the remaining questions, they no longer seemed interested in going forward with the intervention.
I know, better than I’d like to know, a parent’s — or prospective parent’s — desire to believe that she is doing right by her child. But mistakes are inevitable. And I think that our obligation to do right by our children includes the honest reckoning with our mistakes.
Our twins are now healthy and thriving — in no small part thanks to the physician to whom we remain grateful — but we know now that health problems could emerge much later from the prenatal betamethasone, and that we may have to talk about the decision we made, in good faith, if not in full knowledge, to expose them to harm.
My thanks to Ellen for sharing this with us all. In the next Dex Diary, a sea of undisclosed competing interests.