Something Wasn't Right: Missed Diagnoses & Rare Conditions

What do you do when someone you love is going through something life-changing, but you can't fix it for them?

In this episode, I sit down with my sister to talk about what it was like to experience our family's medical journey from the out side. We talk about what it feels like to watch someone you love go through a crisis, how to know when and how to help, and the complicated emotions that can come with continuing to live your own life while someone you love is facing something incredibly difficult.

We talk about the guilt that can come with laughing, going to work, or simply having a normal day when someone you love is struggling. We also share the things that helped us, the things we wish we had done differently, and what family members and friends can do to genuinely support someone during a medical crisis.

Because sometimes you don't know what to say, you don't know what they need, heck they might not even know what they need, and you may even feel guilty for not being able to do more.

This conversation is a reminder that there isn't one perfect way to show up. Sometimes it's a text. Sometimes it's a meal. Sometimes it's sitting beside someone. And sometimes it's simply continuing to love them while also allowing yourself to live your own life.

If you've ever loved someone through a crisis—or wondered how to support someone who is going through one—this episode is for you.

When a baby or child is in the NICU, PICU, CVICU, or facing another medical emergency, friends and family often ask the same question: What can I do to help?

In this episode, I share some of the things that meant the most to our family during one of the hardest seasons of our lives, along with simple, practical ways you can support someone walking through a medical crisis.

From sending a quick text to let them know you're thinking of them, praying for them, or simply reminding them they're loved, to dropping off a meal, sending a DoorDash gift card, or putting together a small care package with thoughtful items like coloring books, devotionals, snacks, or other comforting essentials—small acts of kindness can make a lasting impact.

One of the biggest lessons we learned is that parents in survival mode are almost entirely focused on their child. They often forget to eat, rest, or care for themselves. Any way you can help lighten that burden is a gift.

We also talk about an important reminder: every family responds to crisis differently. Some people welcome frequent visits and conversation, while others need quiet, space, or practical support from a distance. There isn't one "right" way to help—the best support is the kind that meets people where they are.

Whether you know someone in the hospital today or simply want to be better prepared for the future, this episode offers ideas for showing up with compassion when it matters most.

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.

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.

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.

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.

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.

Episode 3 is a little different. I was asked to be a guest speaker at the University of Minnesota’s Speech-Language Pathology and Audiology graduation. In this episode I share that speech as well as some more about our favorite provider: our outpatient speech pathologist.

When so many concerns were minimized or dismissed, she listened and truly cared about us. She advocated for our son and us even if it meant ruffling feathers. Her support not only helped our son, but helped us feel seen as parents during one of the hardest seasons of our lives.

In this episode, I share why compassion and advocacy matter so much as a provider, especially in pediatrics.

If you are in the medical system and looking to improve, this episode is for you.

One day we were searching for answers… the next, we were preparing for heart surgery.

In this episode, I share what it was like to hand my baby over for open heart surgery and spend the next month in the hospital navigating life in the CVICU.

From the moment after surgery — seeing him covered in tubes and monitors — to the emotional highs and lows of recovery, this is the part no one can really prepare you for.

This episode is about survival mode, learning to advocate in real time, and what it actually feels like to become a “hospital parent.”

If you’ve ever had a child in the hospital, or are facing something similar, you are not alone in this.

In this episode:

• What to expect during infant heart surgery recovery

• The emotional reality of having a medically complex baby

• Advocating for your child in a hospital setting

Everyone told me he was fine.

But he wasn’t.

In this first episode of Something Wasn’t Right, I share thebeginning of Kip’s story — the feeding struggles, the subtle symptoms, and the gut feeling I couldn’t ignore… even when multiple providers reassured me everything was normal.

From poor weight gain and NG tube feeds to sweating, breathing changes, and tests that didn’t give answers, this is what it looked like to live in the space between “something’s wrong” and actually being heard.

If you’ve ever questioned whether you’re overreacting, or felt like yourconcerns were being dismissed — this episode is for you.

Because sometimes the signs are there… they’re just missed.

In this episode:

• Early signs of a possible heart condition in a baby

• What feeding difficulties and failure to thrive can look like

• Navigating reassurance from doctors when something feels off

• Learning to trust your gut as a parent

If this resonates, share it with someone who needs it — or someone who needs to understand.

Follow Something Wasn’t Right for more real stories about medical advocacy, missed diagnoses, and raising medically complex kids.