I called in to the Diane Rehm show last week. I’ve called in to other NPR shows before, mainly the programs that discussed how the new health care reform will affect insurance for children (our insurance has an autism exclusion and covers none of Tallulah’s therapies or treatments), but I’ve never managed to get through before. So this time I got through and I felt pretty excited about it. The show was on epigenetics and the guest has written a book called ‘Fetal Origins’. It sounded fascinating and terrifying. Basically what it said is that every single thing a fetus experiences in the womb can potentially affect that child for the rest of his/her life. Things like the predisposition for obesity, diabetes, heart disease, and a bunch of other things were included. I decided to call in about my nagging concern over the anti-nausea drugs I took for hyper-emesis during pregnancy.
I had every intention of very eloquently asking the guest if any studies had been done on possible links between the traumatic hyper-emesis prenatal environment (including the anti-nausea drugs) and the expression of the genes that are associated with autism. I’ve read so much about people believing that autism genes are triggered by these different events (this is part of the continuing argument behind the vaccine wars) that I couldn’t help wondering if anyone had bothered to look at developmental disorders in these studies along with things like obesity and diabetes. I also have to admit that I’ve never really gotten over the way Lu seemed to be developing typically up to a point, then regressed and sort of stopped. What changed? Why was her development derailed so suddenly. Why did she lose speech and go backwards? It seemed like a switch was turned on. Or off.
Unfortunately I was having a sleep deprived, kind of emotional day, and when I started asking my question I felt the need to explain who I am and why I’m asking, and I got so caught up in explaining our story, the difficult pregnancies, the autism diagnosis, that I started to cry on air. Shame. I can’t help it. I’m a Bryn Mawr girl. I don’t ever want to cry or seem weak in public. Especially not when I want to be taken seriously by the people I’m talking to. But I just couldn’t make it through my question. Instead I got derailed by assurances by the host (Diane was off that day for a voice treatment, can’t remember the other host’s name) and the guest that I did not cause my daughter’s autism. Taking the drugs, not taking the drugs, none of this causes autism. I tried to tell them I realize that and that I’m aware of the genetic component, but isn’t that just the sort of thing they are talking about? Genes being turned on and off by events surrounding the fetus?
Anyway, I just wanted to blog about it to try to get the real question that I meant to ask out there. Because according to the most recent studies I could find hyper-emesis affects 1 in 100 pregnancies and autism affects 1 in 110 babies born. Couldn’t someone out there follow 1000 or even 10,000 women who were hospitalized through out their pregnancies for hyper-emesis and were put on anti-nausea medication during pregnancy, for 5 years or more to see how many of those children have problems, including developmental disorders? Anyone out there want to take this one on? I’d love to see the results.
Ok. I've had my say.