Four months ago, I gave birth to a baby girl. After a long labor and unexpected C-section, there was only one thing that mattered to my husband and me: that our baby was delivered safely into the world and was perfectly healthy. Not that I was expecting anything different. She was in the good hands of doctors I trusted and my husband and I did genetic testing before I got pregnant.
Genetic testing seems to fall under the category of undiscussed maternity issues, like breastfeeding difficulties and post-partum recovery. I was only aware of its importance because of my work with 18Doors and some of the pieces we’ve published.
Before we got married, my husband was having a routine blood test and asked his doctor to throw in a Tay Sachs panel. There are multiple strains of Tay Sachs along with several other genetic diseases that are common among Jews as well as various other ethnicities. There was one uncommon disease that my husband turned out to be a carrier for, and that’s where our experience with genetic counseling began.
When it comes to genetic diseases, both partners would need to be carriers of the same disease for there even to be a risk of passing it on to their offspring. If I tested negative, we were in the clear for that disease. What we learned along the way is that some of these diseases are pretty darn horrible. I won’t get into specifics, but I can see how knowing ahead of time that you could potentially pass one of these diseases on would be very scary. In my opinion, getting educated about your risk ahead of time is the first responsible thing you can do for your future child.
I opted to have a full blood test with a comprehensive panel of testing to make sure we were casting the net wide for all possible diseases. I wasn’t a carrier for the disease my husband was, but I was a carrier for a different, more common one. This meant he had to be tested again, this time for that specific disease. Luckily we had no overlap, and it was a huge relief that we could start making babies worry-free! At the same time, it was a cumbersome process which ended up being very costly and time intensive. I wished that:
a. More people were talking about their experiences and offering advice; b. Health insurance would cover the costs, even though we were not already pregnant; and c. That the counselor working with us had more knowledge of the way the health insurance system worked and could have helped guide us through the process in a less costly way (sometimes testing for a broad panel of diseases can cost less than just checking for a couple specific ones).
A great option for interfaith couples considering having kids someday is JScreen, an organization that can screen you for more than 100 diseases and only requires a saliva sample (via a “spit kit”) which can be sent by mail. If you find that you are a carrier for a disease, they’ll set you up with a genetic counselor so you can understand what it means.
Jewish genetic diseases are not only of importance to Jewish-Jewish couples. Because so many other ethnicities carry genetic diseases, including Tay Sachs, it’s not just Jews who are at risk.
While it can be nerve wracking to go through this process, it will either afford you peace of mind to go into your pregnancy unburdened or give you a chance to learn about your options while they’re all on the table.
I feel blessed to have a happy, healthy baby girl and I’m grateful to have been able to rule out certain life-threatening diseases from the long list of things new parents have to worry about.