Trying to Conceive as a Tay-Sachs Carrier
One woman's story of trying to conceive, knowing that she and her partner are both carriers of Tay-Sachs
Most days lately, I wonder where the "old me" has gone. In replacement, my personality seems to have been taken over by one part mourner, one part self-help guru. The griever throws herself weekly pity parties of overeating or trashy television for the dreams of her younger years, of easy pregnancies and a house filled with healthy Jewish children. Following these darker moments, the self-help guru appears, creating mantras and meditations. Each communicates altered versions of the same message: Life will be even better than you could have conceived in those old dreams.
I’ve known for years that being a Tay-Sachs carrier was part of my genetic make-up, but I certainly wasn’t the type to fall out of love with someone because he did or did not share this status. So my boyfriend and I carried on with our lives, and soon we were happily married. He didn't get tested until two years later. We learned then that just as we shared so many values and visions in common, we also shared this genetic fate. I was mad at myself for not pushing him to the doctor sooner, knowing if our road to parenthood would be a long one, that we should have started upon it earlier. Since learning of this news, we’ve boarded a roller coaster ride that we both have sadly learned is just getting started.
Picking Our Poison
We’ve met with a genetic counselor and done our homework. In still hoping to have our own biological children, we’ve considered two of the horrible choices before us: try to get pregnant, test early, and terminate the pregnancy if the fetus is not healthy; or go through hormone treatments, ethical dilemmas, and huge hits to our savings by working through the IVF route to insure a non-Tay Sachs pregnancy.
We’ve chosen to try option one. I, a woman of faith, have made many bargains with God this last year. I’ve thought that if my lot in life was to deal with Tay-Sachs, then certainly I wouldn’t be challenged with getting pregnant. Wouldn’t this be my trade-off? Unfortunately, after months of trying, and now one miscarriage under my belt, I’ve been reminded that such other-worldly bargains were not agreed to by the other party. Although this could be cause for a serious crisis of faith, I now fully understand why, as a young girl, I took on daily prayer, as routine to me now as brushing my teeth. Many might see my challenges and wonder where God is; I see my challenges and feel grateful God is beside me when on the loneliest of days, no one else has the ability to be.
I’ve joined the ranks of women who spend too much time on fruitless internet searches, who walk the streets with "belly envy" for every pregnant woman who crosses my path. I’ve noticed that even knowing what I know, I still have yet to fully let go of a dream that this will all happen with the wave of a magic wand. Although we continue to try the natural means to conception, each passing month brings my husband and I closer to more fully investigating the IVF route. With the passing of the new year, I took the simple step of moving my OB/GYN’s list of good fertility doctors out of my purse and onto my bedside table. Somehow, information is power; it helps to know I have another option, even if I have yet to fully consider what that option looks like. When my gut tells me to pick up the phone and make the appointment, I will.
Not Alone, But Lonely
My genetic make-up has caused many things – doubts, fears, sadness. But perhaps most prevalent of them all is loneliness. I’ve been blessed by the greatest of husbands, the most supportive of parents, and the kindest of friends.
But as any woman struggling with pregnancy-related issues knows, even the most empathetic and wonderful partner cannot know what it means to be so hyperaware of every move your body makes, to pay attention to each thing you eat or feel or do with such new intensity, to fear what it means to have a pregnancy ended by choice. My parents have felt my distance and tried to bridge this gap, but for better or worse, I aim to protect them from some of my pain, and for obvious reasons, don’t want to bring them into my bedroom on a daily basis. I find my friends who are already parents sometimes hard to talk to. One posted a sonogram picture to announce to the world his wife’s pregnancy on Facebook. Another, barely a week after I had shared my miscarriage with him, texted me early in the morning to let me know he was expecting. I marvel at this ignorant bliss, jealous of their joy, angry at their insensitivity, sad that my story isn’t yet heading towards a happy ending.
Since my journey began, I’ve connected with only one other woman who dealt with the same Tay-Sachs diagnosis. As I sat on the phone with her in a dark corner of my office, she gave me a glimpse of how bad it may get. For someone like myself who still dreams of more than one child, I face a decade of uncertainty. One day (and perhaps on more than one day), I may find myself sitting in an abortion clinic amongst those who don’t want a child when I so desperately do. The woman on the phone warned me of the necessities of a political system that will require the clinic worker to ask repeatedly, "Are you sure?" This woman is still the only other person I’ve connected with over our shared diagnoses, partially because the odds are so low, but also because the genetic counselors instruct you to tread carefully. They say I have enough of my own sadness; I don’t need to add other’s judgments about how my husband and I should approach our situation. I’ve found that speaking openly about my miscarriage has helped alleviate this, at least allowing me to share a piece of my story and to remind myself repeatedly that many people do not have smooth paths to parenthood. But my Tay-Sachs story is one I will continue to keep close to the cuff.
The mourner will still continue to mourn, reminded regularly of her broken dreams and altered plans. But my daily prayers are that the self-help guru’s wise words will win out in the end. Among her best advice that I take comfort in: we’re all in exactly the place we’re meant to be in this moment; to learn and grow; this too shall pass; and most of all, maybe the reason for all of this is to, God willing, one day make me a better and more patient mother.
The writer lives on the east coast and works in the non-profit world. In the midst of trying to start a family, she aims to keep herself sane with great friends, good exercise, and some trashy distracting television on the side. Although wishing to remain anonymous to the wider world, she welcomes the opportunity to provide support to those experiencing similar genetic challenges; e-mail can be forwarded to her at firstname.lastname@example.org.