Episode 32 - She Was Compatible with Life: A Mother’s Journey Through Trisomy 13

Episode Summary:

In this episode, host Alison focuses on a personal story rather than running. She shares the story of her daughter, Charlotte Grace, who was diagnosed with Trisomy 13, a rare genetic condition often labeled "incompatible with life." Despite grim medical expectations, Charlotte was born full-term, lived for six days, and defied many statistics. Alison discusses the lack of support and outdated information she received from medical professionals, as well as the hope she found through online communities. She also explains Trisomy 13 and 18, their prevalence, and the evolving medical understanding of these conditions, emphasizing the importance of raising awareness and providing accurate information to families facing similar diagnoses. The experience led to the creation of the “Compatible with Life Virtual 5K”, which honors Charlotte’s legacy and supports families facing similar diagnoses. Alison emphasizes the need for better awareness, more balanced medical information, and a supportive community for parents navigating rare Trisomy conditions.

Key Takeaways:

• Charlotte’s Strength and Defiance of Odds – Despite her Trisomy 13 diagnosis, Charlotte exceeded medical expectations by breathing on her own, growing well in the womb, and showing resilience during her short life. Her medical team was amazed by her progress, and her story challenged the idea that Trisomy 13 is always “incompatible with life.”
• Difficult Medical Decisions and Advocacy – Alison and her husband had to make incredibly tough decisions, including choosing comfort care over a high-risk surgery when Charlotte developed a severe infection. They relied on support from other Trisomy parents to navigate medical options and advocate for their daughter.
• Challenges of a Life-Limiting Diagnosis – Receiving Charlotte’s diagnosis was devastating, and the uncertainty of her condition made planning difficult. The burden of gathering information and advocating for care fell largely on the parents, highlighting gaps in medical guidance for families facing rare conditions.
• Charlotte’s Legacy and Community Impact – Inspired by her daughter, Alison helped create the “Compatible with Life” 5K, raising awareness and support for families of children with Trisomy 13 and 18. She also found strength in a community of Trisomy parents, who provided guidance, hope, and ongoing support.
  
  

Time Stamps:

[00:00] - Introduction & Diagnosis

[05:30] - Pregnancy & Advocacy

[15:00] - Charlotte’s Birth & Medical Journey

[25:00] - The Infection & Difficult Decisions

[35:00] - Grief, Reflection, & Family Impact

[45:00] - Charlotte’s Legacy & Moving Forward

Resources Mentioned:

• Resources for families of children with Trisomy 13 or 18: 
• SOFT - Support Organization For Trisomy
• The Stella Effect
• Extra to Love 
• Verity’s Village 
• Abel Speaks
• Compatible With Life Virtual 5k: Learn more about the Compatible with Life 5k and get on the interest list for the next event HERE.

Quotes:

1. "She lived for six days—her heart beat, she breathed on her own, she was compatible with life and knew so much love."
2. "The news and the way it was originally delivered was devastating, but so much was out of our control. And I do not do well with that—I am a planner. But this experience taught me that sometimes, all you can do is love fiercely in the time you are given."
   
   

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