Taboo Talks Ep.3: Emma’s Story

Emma Bliss learned of her X-linked myotubular myopathy carrier status the way many X-linked carriers do – by giving birth to a child with the condition after a healthy pregnancy and zero family history. Caleb, Emma’s second child, lived for 5 months in the NICU and was held and loved by his family the entire time. Emma is a mother of three and resides in New Hampshire with her husband, two kids and dog. After Caleb passed, knowing they wanted to grow their family, they sought the guidance of a genetic counselor. Laying all the odds and information on the table, they decided to try naturally and found out at 11 weeks, that they were carrying another baby boy affected with XLMTM. After a painful decision to terminate at 13 weeks, knowing they would never put another baby through what Caleb had been through, they decided that IVF and embryo testing might be the next course of action. While building a probe with a lab and completing all the costly preliminary IVF tasks, they found out that they were pregnant again with a baby girl naturally. Through the entire experience, Emma has learned that what might be the right path for one family, might be the wrong for another and that every single decision is personal. She shares that knowing all your options, even when faced with difficult and gut-wrenching decisions, is the first and largest step.

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.