Taboo Talks Ep.6: Nicole’s Story

Nicole Hunter is a 30 year old woman from Virginia who is affected with Duchenne Muscular Dystrophy (DMD). She first became pregnant September 2020 and with no known family history of genetic diseases, it was a shock when it was discovered she was a carrier for DMD at routine genetic testing done at 12 weeks prenatally. At the same time, she found out she was also having a baby boy. Nicole proceeded to meet with a genetic counselor and made the decision to have an amniocentesis at 16 weeks to see if her child was affected with DMD. She got the results back at 21 weeks and she learned her baby boy was affected with Duchenne Muscular Dystrophy. Nicole and her family decided the right choice for them was a TFMR. Two days later, in February 2021, she had the procedure at 22 weeks pregnant. She is currently in the midst of her IVF journey in hopes of having a child unaffected by the condition.

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.