Woman Grieving Motherhood Due to BRCA II Genetic Mutation

Susan Youngsteadt, a 31-year-old social worker from Raleigh, North Carolina, has faced profound grief throughout her life. She lost her mother to early onset Alzheimer’s when she was 17 and her father to prostate cancer at 25. Her grief extends beyond death, as she carries the hereditary BRCA II genetic mutation, commonly known as the breast cancer gene, which could be passed on to her future child.

Youngsteadt’s journey is marked by the grief of possibilities lost – the prospect of having children, routine doctor’s appointments, and the uncertainties of her future. Despite societal biases that often dictate which forms of grief should be mourned or honored, all forms of grief are valid, according to licensed marriage and family therapist Loree Johnson.

For Youngsteadt, this genetic mutation carries a significant risk, with statistics indicating that 50 out of 100 women with a BRCA gene mutation will develop breast cancer by age 70, compared to just 7 out of 100 women in the general population. Additionally, 30 out of 100 will develop ovarian cancer by the same age, as opposed to fewer than 1 out of 100 women in the general population, according to the Centers for Disease Control and Prevention.

Youngsteadt inherited this genetic risk from both sides of her family – her father’s side had a history of breast cancer, while her mother was also a breast cancer survivor. This “double whammy” significantly heightened her likelihood of inheriting the gene mutation.

At an age when most people are thinking about marriage and starting families, Youngsteadt found herself navigating her health in a different way. Just six weeks after learning about her genetic mutation, her father passed away due to cancer. However, he had assured her that they would face whatever challenges lay ahead together.

Managing her health became a complex and expensive endeavor, involving regular mammograms, MRIs, and ultrasounds. While some of these medical expenses were covered by insurance, others were not. This added financial burden has weighed heavily on Youngsteadt, as she had to budget for these essential health-related costs in her early 20s, while her peers enjoyed a different lifestyle.

Her loving partner accepts her decision not to have children, which is influenced by her health risks. Nonetheless, she actively seeks therapeutic support and a community that shares her choice to be childless. For some patients in similar positions, specialized genetic testing may be an option where embryos are screened for the relevant genetic mutations.

Youngsteadt’s plan includes a full mastectomy with reconstruction and the possibility of removing her ovaries. While her journey is marked by grief, she also finds comfort in her social work background and connections within the grief community.

Grief often surfaces unexpectedly and may be uncomfortable to discuss, leading some to avoid conversations about it. However, experts emphasize the importance of acknowledging and addressing grief, as it can profoundly impact an individual’s life.

Despite the complexities and challenges she faces, Youngsteadt is finding her purpose in helping others navigate grief and is currently pursuing certification as a grief clinician and training as a death doula.

Her journey, though marked by sorrow, has led her to believe that immersing herself in the world of grief is where she’s meant to be, offering comfort and understanding to those who share similar experiences.