Taboo Talks Ep.7: Sarah’s Story

Sarah K. is a 40-year-old photographer and barre instructor from Minnesota. In 1965, her mom’s brother Ladd became suddenly and seriously ill. He was eventually diagnosed with sudanophilic leukodystrophy, which we now know to be adrenoleukodystrophy. After several more long months, Ladd passed away and her grandmother learned that she was a carrier of ALD.

Her grandparents, mom, and sisters were understandably changed by Ladd’s death — helplessly watching their sweet boy slip away. Her grandma lived long enough to make it to her wedding day — she was in a wheelchair having lost the ability to walk due to ALD. On one of visits to the nursing home before she passed, she talked briefly about when Sarah would have children. Sarah wishes she remembered the exact words, but the gist was a strong, cautionary tale — do not have a boy with ALD, do not put a child through the suffering and yourself through the heartbreak.

“I’ve known I am a carrier of ALD for as long as I can remember. I thought perhaps I’d adopt someday. When my husband and I were ready to have children, we looked seriously at our options. We came to the tough and risky decision to start by trying to conceive naturally. The ‘math’ gave us a 75% chance of having a child that was NOT a boy with ALD. A 50% chance of a child (boy or girl) without ALD. We knew going into it that if we were to conceive a boy with ALD, we would terminate the pregnancy. But I honestly don’t think that either of us truly thought it could come to that.

We conceived after only 2 or 3 months of trying — and we were cautiously optimistic. The exact details are a little blurry because I didn’t document this at the time… We found out that I was pregnant with a boy. We waited for CVS testing at the 11 week mark. From what I recall, they didn’t get the sample that they needed so I went back for testing again at 12 weeks. Somewhere around 13 weeks, we learned that he was, in fact, a boy with ALD.

It was… soul crushing. I never questioned that the termination wasn’t the right thing to do. I was fortunately fully confident in that decision. But I also didn’t anticipate just how hard it would be. At the appointment the next week, a clinic volunteer ushered my husband and I past pro-life protesters. The clinic was filled with pamphlets about adoption and parenting counseling and choices. But we didn’t have a choice. The ‘funny’ thing is… I was worried about how I was going to feel about the other women at the clinic. I was worried that I was going to be mad at them for choosing not to have their babies — when we wanted ours so much. I was worried that I was going to judge them and compare them to my situation. But I didn’t. Instead, in the quiet room where everyone averted their eyes, I felt solidarity. That everyone was there for their own reason, and that was okay with me.

The actual termination was traumatic. At that appointment it was determined that the fetus was measuring further along than expected — closer to 15 or 16 weeks. I was sent home, still pregnant, to schedule a new appointment for a two-part procedure. As I’m sure one can imagine, this is not something that I wanted to prolong. At the follow-up appointment another week later, a volunteer held my hand and stroked my arm and talked to me in a soothing voice (another person was not allowed in the room). I’m very thankful to those volunteers during what is already a very isolating experience.

After the whole process, with some extra bumps along the way, I immediately knew it was not something I could emotionally endure again. We started to make plans for IVF with PGT. We went through two fresh cycles, a frozen cycle and one more fresh cycle to conceive our older son in 2011, and one fresh cycle to conceive our younger son in 2014. It was tough too, at times, especially the failed cycles. But we have our healthy boys. I do think of our first pregnancy on occasion, and I feel that loss. But I also still feel it was the right decision for us.”

Listen to her full story on collectively coeXisting.

Taboo Talks

We launched our “Taboo Talks” series on the Remember The Girls Podcast, collectively coeXisting. Throughout this series, we will be highlighting different issues X-linked carriers face that are rarely discussed due to the stigmas and controversies that surround them. We hope that in doing this that we can emphasize that there are people, families, and loved ones behind these decisions. These conversations may be uncomfortable, but they must be heard, and we must respect the voices of the carriers and female patients who share their journeys. These are not tales – these are their lives, their journeys and their personal recollections of who they are in this world. These personal stories are meant to be shared and used as support for future women who may go through similar situations and come face to face with some tough decisions. As a disclaimer, this podcast series features sensitive topics. Understand that the opinions and topics do not express or represent the organizations personal feelings but are here to solely share the guest speaker’s journey and life’s experiences. These opinions and stories are theirs and theirs alone. Please also consult your doctor or a mental health professional regarding your own personal care.

For our first collection of episodes, The Stories Behind TFMR, we will be speaking to X-linked carriers who have experienced a TFMR, or termination for medical reasons. A TFMR occurs when a pregnancy is terminated due to a chromosomal, genetic or structural fetal anomaly, or where continuing the pregnancy would risk the health or life of the mother. We share these conversations to give a glimpse into the complicated world of family planning as an individual with an X-linked mutation. Please know that TFMR for X-linked conditions is not available in all US states or countries.