Being a Carrier for a Genetic Disease

“People talk about infertility and pregnancy loss as reasons they don’t have the family they dreamed of. I’ve never heard of anyone talk about genetic carrier issue.

My husband and I did everything “right.” Got genetic testing before engagement, at every pregnancy, etc.

My third pregnancy ended very quickly in a loss. I managed to get tested at an early appointment, and I was found to be a carrier for a disease so horrible I won’t discuss it here.

The test for this disease was not available until after I had my two kids.

My husband dragged his feet and finally got tested after months of me pushing him. I mean what were the chances, right?

The doctor called while we were having a screaming fight with my MIL on the phone. He was also a carrier and we had to get our kids tested to see if were affected…symptoms appear in late childhood.

So now I was mourning a loss, and I had to deal with the results of the test.

After waiting for an appointment with a geneticist and waiting six weeks for the results, we found out that the kids were Baruch Hashem (Thank Gd) okay!!!

Now we had to decide how to proceed.

I wanted to do IVF and pgd. My husband was afraid of more pain wanted to close the book. I needed to have hope and desperately wanted to try again, but he was done.

Four years of pain, anger, fighting, and counseling later I’ve given up, and come to terms…sort of. I’m happy to be out of the baby stage but I can’t handle babies, pregnant women, etc

Why am I telling you this?

I can’t be the only one with a story like this. However the stigma surrounding shidduchim (dating for marriage) and genetics in the Jewish community is so great, that I need to keep this quiet until the right time for my children, with the guidance of rabbis and medical professionals.

I wish I could tell the world the truth and be free of this shame, but I can’t, so I’m sharing my story this way.

I guess I want the world to know that there are people like me out there and I needed to get this off my chest.

In the end, I never got to say goodbye to my childbearing years.

They were ripped from me without my consent, at age 32.

I feel like my body is being wasted like my uterus is collecting dust.

Throughout the saga I went to work, made yuntif (this all happened during the chagim/jewish holidays) while insane with grief and fear.

I got the call that my kids were ok while I was teaching. I answered and cried tears of relief in front of a class of very confused children…

I’m so grateful that my kids are ok.

This could have been a zillion times worse.

But I still cry and mourn my loss and the loss of the family I so desperately wanted.”