AAP Voices Blog

One autumn day in 1999, when I was practicing as a community pediatrician, the mother of a five-month-old asked me whether her baby startled more than she should. Her worry, tragically, was justified. Her baby had Tay Sachs disease and would die shortly after her second birthday. That is where this story begins. 

The mother was Blyth Lord and her daughter was Cameron. From the moment she shared her concerns, I found myself practicing a different kind of pediatrics, aided by my relationship with Blyth and her husband Charlie, who rose to their task as parents with grace and the purest of intentions. They have agreed to allow me to share their story. 

The stakes were high, but I was just trying to be a good pediatrician and they were trying to be the best parents they could for their daughter. We didn’t know it at the time—the field was nascent and many of the foundational articles had yet to be published— but we were working together to provide palliative care. 

We knew that Cameron’s life would inevitably end, but we tried to assert some control over the steps we would take along the way. We tried to understand the choices we had, and I tried to counsel them so that their decisions were informed by their values and hopes for their daughter. We were sincere and honest with each other. We treated every interaction with care and didn’t place undue emphasis on making each other feel better at the expense of facing uncomfortable issues. We strove to give Cameron the best life possible, as they understood it. In the complex rush of feelings I had when Cameron died, I felt satisfaction for my part in helping Blyth and Charlie be exceptional parents to Cameron through her difficult and brief life. I felt grateful that we had been able to care for her so well.  

Since then, pediatric palliative care has become a boarded subspecialty and an important part of healthcare for seriously ill children. Many can claim a part in what has developed on the interdisciplinary professional side, a cast of hundreds who have played important roles in turning pediatric palliative care from an argument into the standard of care. But something truly remarkable happened on the parent and family side as well, and Blyth Lord played a unique role in it. It may say something about the field of pediatric palliative care that the parent voice is valued, but it says more about the power of informed and engaged parents working with clinical teams on behalf of their children. Which brings me to the reason for this blog: the wonderment I feel celebrating the 10th anniversary of the Courageous Parents Network (CPN). 

When I think back to those days caring for Cameron, I am not surprised that Blyth was driven to make it count for more. I am not surprised, at all, that she succeeded in such spectacular fashion. Blyth started CPN as an online resource for parents to hear from other parents about the difficult choices they face while parenting a child with serious illness. She incorporated caring advice from clinicians about navigating through illness and the medical world. She provided parents with private, personal access to careful thinking about things like working with the medical team, making difficult decisions, caring for siblings, tending the parenting partnership, anticipating end of life, and coping with grief. The Courageous Parent Network has evolved into a sprawling library of original videos, podcasts, downloadable guides, and guided learning pathways. It has become a trusted guide for the parents of our sickest, most complex patients. It has become a resource for clinicians, both as access to parent educational materials and as access to parent voices and concerns. The network has grown into a treasured medical resource borne of deep and mutual understanding.  

“There is a moment as we care for seriously ill children when we can ask ourselves what our role is. What can some subspecialist do better for the child and family? The resources of the Courageous Parents Network are a good way to think that through.”

There is a moment as we care for seriously ill children when we can ask ourselves what our role is. What can some subspecialist do better for the child and family? The resources of the Courageous Parents Network are a good way to think that through. You will see what parents hope you will provide and a clear message about the importance of continuity, patient and family advocacy, and access to your counsel. The messages will resonate with the reason we practice pediatrics in the first place and inspire us to be courageous, too. 

Having been there at the start, I would say that the secret of the Courageous Parents Network’s phenomenal presence is that we are surrounded by Blyth Lords, loving parents who can be helped to understand the stakes of their decisions and who can make their child’s medical care better. Parents who show clinicians what their love can look like, in a true testament to Cameron and all children whose parents are given the chance. We should all celebrate the extraordinary therapeutic tool, and gift, that is The Courageous Parents Network. Happy birthday, CPN!