Fertility Preservation for Rare Disease Warriors

In a time marked by heightened awareness and discord surrounding reproductive health, caregivers of children with rare diseases carry a unique burden – the preservation of their child's fertility.

As my daughter approaches an age where fertility preservation becomes a pressing concern, I am acutely aware of the responsibility that comes with safeguarding her options for the future. Reflecting on the privilege of reproductive freedom as I grew older, I realized the importance of considering long-term impacts on her future, even as she may not yet be thinking about it herself.

My hope is to shine a light on the significance of fertility preservation for children grappling with rare diseases and highlight the crucial role of reproductive health advocacy in our current societal landscape.

The commitment of caregiving

Caring for a child with a rare disease demands consistency and an unwavering commitment to their well-being. While inundated with numerous medical decisions, fertility preservation is a topic that often slips under the radar.

As a caregiver, it is essential to recognize that fertility preservation discussions should be integrated into our comprehensive care plans, even during a child's pediatric years. By acknowledging our child's emotional, psychological, and physical dimensions, we can nurture hope and empower them to make choices aligned with their future needs.

As caregivers, we don't have the luxury of focusing only on what is written in front of us right now, but we also must think about what could happen.

Fertility preservation slips under the radar

Rare diseases and their treatments can affect fertility. Yet, fertility preservation discussions are postponed and are often costly, leaving families unprepared and overlooking the potential impact on their child's long-term well-being.

By proactively engaging healthcare professionals, caregivers can initiate conversations about fertility preservation options tailored to their child's unique circumstances. Educating ourselves about available techniques, such as ovarian and testicular tissue cryopreservation or sperm and oocyte cryopreservation, equips us with the knowledge needed to advocate for our children's reproductive rights.¹

Big implications in and out of the courtroom

The discussion came to my attention and alarmed me when I heard about the Alabama Supreme Court's ruling in early 2024. The court declared that frozen embryos are considered children, and individuals who destroy them can be held liable for wrongful death.²

This decision has significant implications for fertility preservation as it places legal protections on embryos and may restrict certain practices, impacting the options available to individuals seeking fertility preservation.

Navigating reproductive health in a challenging landscape

Frankly, navigating the landscape of reproductive health advocacy can be daunting. In the face of polarizing opinions and divisive debates, staying informed, connected, and resilient is crucial. Collaborating with support groups, patient advocacy organizations, and healthcare providers who specialize in rare diseases can provide us with the necessary guidance, access to resources, and emotional support.

In the sickle cell disease community, we have the Sickle Cell Reproductive Health Education Directive, which helps educate the community about reproductive health and champions preservation funding for interested sickle cell warriors.³

Together, we can break down barriers, challenge misconceptions, and create an environment where fertility preservation is viewed as an essential aspect of a comprehensive healthcare approach.

Normalizing reproductive health conversations

By embracing reproductive health discussions openly, we contribute to the destigmatization of fertility preservation, allowing it to become a more integrated part of healthcare conversations.

Through raising awareness and sharing our experiences, we can challenge the popular and divisive narratives surrounding reproductive health.

By fostering an inclusive and empathetic society, we create an environment where children with rare diseases can confidently explore their options and make informed decisions about their reproductive futures.

Empowering our children

As caregivers, we have the privilege of supporting our children through their unique journeys. By actively involving them in fertility preservation discussions, we embrace their autonomy and empower them to take an active role in nurturing their hopes and dreams.

By providing our children with access to information and resources, we enable them to make informed choices about their reproductive health, instilling a sense of agency and hope for their future.

Our role in safeguarding our children's reproductive options

Navigating the complexities of fertility preservation for children with rare diseases can be an overwhelming task for caregivers. However, by prioritizing these conversations and seeking out knowledge and support, we can play a pivotal role in safeguarding our children's reproductive options.

In a society where reproductive health debates are divisive, it is our duty to advocate for the normalization of fertility preservation discussions. Together, we can create a future where rare disease warriors can embrace their possibilities and embark on their journey to parenthood with hope and confidence.

How do you feel about the new Alabama law and fertility preservation? How often do you think about fertility preservation for yourself or a loved one who lives with a rare disease? Share in the comments below.