ONCE UPON A GENE - EPISODE 059 - Palliative Care & Courageous Parents Network with Founder Blyth Lord
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Blyth Lord is the Founder of the nonprofit, Courageous Parents Network, an educational platform that orients, empowers and accompanies families caring for children with a serious illness. The mission and goals of Courageous Parents Network originated from Blyth's experience of parenting her daughter diagnosed with Tay-Sachs at 6 months old.
EPISODE HIGHLIGHTS
Can you share your background and tell us about your family?
My husband and I have three daughters. Our second daughter Cameron would be 22 now, but she died in 2001 at the age of two from a rare genetic condition, Tay-Sachs. She was diagnosed at 6 months old. She was diagnosed much earlier than what is typical because her cousin Hayden was diagnosed with Tay-Sachs when he was 18 months old. Because my husband is an identical twin with Hayden's father, I assumed he was also a carrier and that my daughter could also have Tay-Sachs. Upon testing, I was also a confirmed carrier and Cameron was diagnosed. Cameron's diagnosis with this rare, fatal disease continues to be a big part of our family story. My two surviving daughters and Hayden's two sisters understand that their siblings are a core part of our family.
What part have Cameron and Hayden played in your family moving forward?
I focus on promoting the value of palliative care. There was no hope for treatment or therapy when Cameron and Hayden were diagnosed and the only care plan we had was a palliative care plan. It was devastating that there was nothing we could do to prolong their lives through experimental treatment or trials, but when palliative care is your only plan there's a lot of acceptance, peace and resolution. We had 18 months to come to terms with the prognosis and determine what we wanted for Cameron. From early on, we had to accept what was coming, but it meant that afterwards it was easier to focus on Cameron and Hayden's legacy and the meaning of their short, beautiful lives.
Can you explain what palliative care is?
Hospice is end of life care, the tail end of palliative care. Palliative care focuses on quality of life for anyone living with a life-threatening condition. From the point of diagnosis on, palliative care is an appropriate addition to a care plan, delivered concurrently with curative treatments that treat, manage and potentially cure the condition. Palliative care is an extra layer of support which helps patients and caregivers make treatment decisions with quality of life in mind.
Did you seek out palliative care for your daughter?
We didn't even know what palliative care was. Our daughter's pediatrician practiced palliative medicine with us, had goals of care conversations with us, did advanced care planning with us to determine what we wanted and what mattered to us. The pediatrician did the research and determined the critical decisions we had to make so we could make informed decisions when we had to make them.
What are the support services offered through Courageous Parents Network?
Courageous Parents Network delivers accessible digital content online through videos, podcasts, blog posts and downloadable guides. We feature over 550 videos of parents who are actively parenting children with a serious illness or bereaved parents who share their experience of caring for their child. We feature videos of chaplains, social workers, clinicians, nurses, psychologists, grief counselors, palliative care doctors and surgeons to highlight how they help families in making decisions. The podcast features stories of parents, grandparents and siblings who talk about their experience with a medically complex family member. The downloadable guides are produced by parents and expert providers and aim to help with decision making and other unique situations. All content focuses on the psychosocial and emotional landscape of what it means to care for a child with a serious condition. We focus on the shared experience of many conditions across five categories- coping with the diagnosis, understanding medical interventions, caring for your family, anticipating end of life and bereavement.
LINKS AND RESOURCES MENTIONED
Once Upon a Gene Channel with The Disorder Channel
TUNE INTO THE ONCE UPON A GENE PODCAST
CONNECT WITH EFFIE PARKS