“We just found out that we are pregnant, and the fetus has familial dysautonomia. Should we have an abortion?” As both the president of FD NOW and as a mom of a young adult with FD, I’m asked this question every so often. Each time it is heartrending. The conversation usually beings something like this, “As potential new parents, we’ve read your entire fdnow.org website and we just don’t know what to do. On the one hand, the treatments are tangible, safe, accessible, and working; on the other hand, there are still significant life-altering challenges.” What a quandary, especially for first-time parents.
Before answering, I take deep breath and open my heart to their struggle. Abortion has been a controversial topic of discussion and debate since the 1970’s with the landmark ruling of the US Supreme Court case Roe vs Wade and more recently in 2022, the Dobbs vs. Jackson Women’s Health Organization. It continues to be fraught with political, ethical, and legal considerations. Any decision regarding abortion is highly personal, but this is particularly so in the context of FD families because of the many unknowns involved. The topic is so delicate, and even more sensitive when discussing with me, a mom of a 30-year old with FD.
In the conversations with couples seeking my input, I am candid about our son’s journey, which has not been easy, to say the least. I am truthful in chronicling how the treatments have vastly improved our son’s life. I share the collective experiences of the FD community highlighting the similarity and variation between our FD kids. I underscore that the FD researchers remain guarded when pressed about a 100% cure for FD. After our discussions, one couple proceeded with the pregnancy; another couple elected to abort the pregnancy.
The good news is that these days I am only rarely asked my opinion on aborting an FD fetus. That’s because so few FD fetuses are conceived today. In the early 2000’s, OBGYN’s became duty-bound to recommend genetic testing for FD to all their Ashkenazi Jewish patients, due to the risk of FD transmission in this population when both parents carry the FD gene. Click here to learn more. That new mandate, along with the ease of a simple blood test for FD, led to a rapid decline in the number of FD births. Today, there are very few recorded FD births compared with 15-20 FD births per year about 20 years ago. Today, about 300 people have FD; many are young adults. Those 300 are members of a shrinking cohort, and as they look over their shoulder, almost no one is following in their footsteps. But looking forward, we are always here to help any couple work through this highly personal situation with empathy, dignity and respect.
Ann Slaw, JD
President, FD NOW
Parent to young adult with familial dysautonomia