Omslagafbeelding van de show Something Wasn't Right: Missed Diagnoses & Rare Conditions

Something Wasn't Right: Missed Diagnoses & Rare Conditions

Podcast door The Advocate Co.

Engels

Technologie en Wetenschap

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Over Something Wasn't Right: Missed Diagnoses & Rare Conditions

Something Wasn’t Right Missed diagnoses, rare conditions, and fighting for our kids. They said everything was fine. It wasn’t. This podcast shares real stories of missed or delayed diagnoses, rare diseases, and parents who knew something was wrong and fought to be heard. Hosted by a mom whose child’s congenital heart defects were missed, this show explores dismissed symptoms, complex conditions, and the journey to answers—while empowering parents to trust their instincts and advocate for their kids.

Alle afleveringen

6 afleveringen

aflevering 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 mei 2026 - 32 min
aflevering 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 mei 2026 - 47 min
aflevering Episode 3- University of Minnesota Speech artwork

Episode 3- University of Minnesota Speech

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.

10 mei 2026 - 22 min
aflevering Episode 2 - The Longest Month: Heart Surgery, the CVICU, and Learning to Survive It artwork

Episode 2 - The Longest Month: Heart Surgery, the CVICU, and Learning to Survive It

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

3 mei 2026 - 1 h 6 min
aflevering Episode 1 - Something Wasn’t Right: Our Story about the Signs Everyone Missed artwork

Episode 1 - Something Wasn’t Right: Our Story about the Signs Everyone Missed

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.

25 apr 2026 - 55 min
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