We were first introduced to Lily Blackburn’s story when she was 11 years old.
Three years later, Lily and her family’s journey is far from over. Her parents, Chrissie and Charles have continued to navigate her ongoing medical care. She had a successful kidney transplant on December 9, 2020, which was complicated by her temporarily becoming diabetic due to Prednisone. Like any family going under severe medical issues, they have suffered trauma from the vigilance it takes dealing with all the complexities of Lily’s care with numerous waves of hospital episodes and repeated follow-up care.
Yet, they are happy that she gains in strength over time. “Without hope and faith, you have nothing,” said Charles during a phone interview.
Because Chrissie knew what questions to ask, thanks to growing up in a household where her mother worked in quality and safety for 4 decades, Lily was saved from preventable medical harm. “If that MRI technician had not listened to me all those years ago…and trusted that I knew my daughter better than he did, the outcome would have been very different. It taught us that transparency is critical to safe care and how to effectively partner and become a team with her care providers,” she said.
“Through the Patient Safety Movement Foundation, we have come to know so many more advocates and families that have been affected by medical harm. We want other parents to know that they can empower themselves with knowledge and use the free resources available, especially on the website. We feel like we are part of a community that cares with this organization. We encourage you as parents to investigate your care options and actively be involved with your childrens’ care. This partnership can save their lives.”
Chrissie brings up “partnership” – meaning the care team partnering with the family. Partnering with the care team of whoever you’re advocating for can be tough when emotions are running high. Yelling, being angry, or forceful, is not productive for either side. It’s about mutual respect and she reminds us that this is incredibly important to keep in mind.
Chrissie now has a professional career in patient safety because of her and her husband’s experience of caring for Lily. She advises a hospital system on how to improve patient and family engagement. The Blackburn story is beautiful because it’s a positive story about how Chrissie’s upbringing helped empower her to speak up for her daughter and how that now impacts her ability to transfer those skills and knowledge into her professional career advancing patient and family engagement within her larger community.
Director of Development