I read an article about pregnancy screening for disabilities recently.
In it, there was one quote from a mom who has Ehlers-Danlos syndrome (EDS), an inherited condition which affects connective tissue and causes regular dislocations, that I totally related to:
“There’s very much an attempt to screen out defects and I found that troubling because every time they mentioned a condition I thought of a person I know with that disability, with a name and a face.”
Deciding to have a child when you have a genetic disease is personal and complicated. I know a woman with hereditary angioedema who says she would’ve thought twice about having children if she’d been diagnosed before her children (whose HAE attacks started at an early age) were born.
I know another who had in vitro fertilization that supposedly screened out eggs carrying the gene that causes HAE. There’s no guarantee that her baby won’t have the disease, but it made her worry less about it. She doesn’t talk about it often, because she frequently feels negatively judged about her decision.
The women from the article I read (including the mother with Ehlers-Danlos syndrome) both mentioned judgement—funny looks and raised eyebrows—around their pregnancies.
So what about all of you out there in Patient Worthy land? Tell us where you stand on genetic testing to screen out disease and disability. Would you get tested? How would the screening results affect your decisions?