Taboo Talks Ep.1: Brittney’s Story

Brittney is a 37 year old woman from Baltimore, Maryland. Her story goes back to November 2018 when she found out at 10 weeks into her pregnancy that she was a carrier for Fragile X syndrome. When she received this call, she had no idea what that was or what that would mean for her pregnancy. After meeting with a genetic counselor, she learned she was a mosaic, full mutation carrier and because her repeats were more than 200, her child would have a full expansion if they inherited her affected X chromosome. Two weeks after this meeting, she proceeded with a CVS (chorionic villus sampling), a procedure that tests the amniotic fluid to determine if the baby would be affected with Fragile X. 16 days later she received the life changing news that the baby was a boy and had inherited her full mutation and she moved forward with a TFMR a week later.

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.