Something Wasn't Right: Missed Diagnoses & Rare Conditions

Episode 8 - If I Could Change the System

19 min · Ayer
Portada del episodio Episode 8 - If I Could Change the System

Descripción

What If We Built a Better System? After everything our family went through to get answers for our son, I've spent a lot of time asking myself one question: What would I change if I could redesign the healthcare system? In this episode, I share six changes I believe could help improve patient care, reduce missed diagnoses, and create a system that is less dependent on individual human judgment alone. While medicine has accomplished incredible things, it is still vulnerable to human error, cognitive biases, communication breakdowns, and fragmented care. Drawing from our family's experience, I discuss the importance of trusting the body's signals, looking for root causes instead of simply managing symptoms, viewing patients as whole people rather than a collection of separate systems, creating more time for providers to listen and observe, leveraging artificial intelligence to identify patterns and missed opportunities, and investing more heavily in health, prevention, and lifestyle education. This episode isn't about blame. It's about asking hard questions, imagining better solutions, and exploring how we can build a healthcare system that supports both patients and providers while improving outcomes for everyone. Because every missed diagnosis represents a family searching for answers—and every improvement has the potential to change a life.

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9 episodios

episode Episode 8 - If I Could Change the System artwork

Episode 8 - If I Could Change the System

What If We Built a Better System? After everything our family went through to get answers for our son, I've spent a lot of time asking myself one question: What would I change if I could redesign the healthcare system? In this episode, I share six changes I believe could help improve patient care, reduce missed diagnoses, and create a system that is less dependent on individual human judgment alone. While medicine has accomplished incredible things, it is still vulnerable to human error, cognitive biases, communication breakdowns, and fragmented care. Drawing from our family's experience, I discuss the importance of trusting the body's signals, looking for root causes instead of simply managing symptoms, viewing patients as whole people rather than a collection of separate systems, creating more time for providers to listen and observe, leveraging artificial intelligence to identify patterns and missed opportunities, and investing more heavily in health, prevention, and lifestyle education. This episode isn't about blame. It's about asking hard questions, imagining better solutions, and exploring how we can build a healthcare system that supports both patients and providers while improving outcomes for everyone. Because every missed diagnosis represents a family searching for answers—and every improvement has the potential to change a life.

Ayer19 min
episode Episode 7 - How does this happen? artwork

Episode 7 - How does this happen?

How Does This Happen? When a serious diagnosis is missed, one of the first questions people ask is: How does this happen? In this episode, I explore some of the factors that may contribute to missed diagnoses—from human error and cognitive biases to the limitations of healthcare systems and processes. This is not about assigning blame to any one person. It's about understanding how well-intentioned people can miss important pieces of the puzzle and what we can learn from those experiences. Most importantly, we talk about the role parents play in the diagnostic process. No one knows your child better than you do. If something doesn't add up, if progress isn't happening, or if your instincts tell you there is more to the story, it's worth continuing to ask questions and search for answers. Because symptoms are often clues, not conclusions. And finding the root cause can change everything. This episode is a conversation about advocacy and the lessons we can learn to help create better outcomes for children and families in the future.

17 de jun de 202632 min
episode Episode 6 - Hard is Hard artwork

Episode 6 - Hard is Hard

One of the biggest lessons our family's journey has taught me is that hard is hard. We spend so much time comparing struggles—trying to decide whose situation is worse, whose pain is more justified, or who has it harder. But the truth is, every person is carrying something. And whatever they're carrying feels heavy to them. In this episode, I share why I've stopped ranking hardship and started focusing on grace instead. During some of the hardest seasons of our lives, most people had no idea what was happening behind the scenes. They didn't see the sleepless nights, the fear, the medical appointments, or the uncertainty surrounding our son's health. From the outside, everything may have looked normal. That's why this episode is a reminder to choose kindness whenever possible. The person who seems distant, impatient, or even rude may be fighting a battle you know nothing about. They may be carrying fear, grief, stress, or a burden that isn't visible to the world. You never truly know what someone is going through. Let's talk about compassion, perspective, and why a little extra grace can make a bigger difference than we realize.

31 de may de 20266 min
episode Episode 5 - God Winks: Finding Faith, Meaning, and Strength in the Hardest Moments artwork

Episode 5 - God Winks: Finding Faith, Meaning, and Strength in the Hardest Moments

In this episode, I share the “God winks” — answered prayers, God’s timing, and moments that felt like God was there. This isn’t about having perfect faith. It’s about what it looks like to wrestle with fear, hold onto hope, and find meaning in the middle of something you never would have chosen. Because sometimes, even in the hardest seasons, there are moments that remind you you’re not alone. In this episode: -Finding faith during medical uncertainty-Recognizing meaningful moments in difficult seasons -How this journey changed my faith If this episode speaks to you, share it with someone who needs a reminder that they’re not alone in what they’re walking through. Follow Something Wasn’t Right for more real, honest conversations around motherhood, advocacy, and resilience.

23 de may de 202632 min
episode Episode 4 - Home, But Not Free: Medications, Fear, and the Reality After Discharge artwork

Episode 4 - Home, But Not Free: Medications, Fear, and the Reality After Discharge

Going home was supposed to feel like relief. But it didn’t. In this episode, I share what life actually looked like after leaving the hospital — managing medications, adjusting to life without monitors, and carrying the constant weight of responsibility for a medically complex baby. From the ups and downs of daily life to the unexpected fear ofcomplications — including a blood clot — this is the side of recovery people don’t always talk about. Because getting discharged isn’t the end of the story… it’s the beginning of a new one. In this episode: -Life after CVICU discharge -Managing medication for a baby at home -Recognizing patterns, complications and continued advocacy -Navigating fear and distrust -Adjusting to a "new normal" as a medical parent If you’re in this stage right now, or heading into it, this episode will help you feel less alone. Follow Something Wasn’t Right for more on navigating life with a medically complex child.

18 de may de 202647 min