Inside the Children's Hospital

What happens when your child seems sick, but everything keeps coming back normal?
For a lot of parents, the scariest part isn't the diagnosis. It's the not knowing. It's being told everything looks fine when your gut is telling you something is off.
This week, Katie sits down with Kayleigh, a medical assistant and mom of three, to share the story of her daughter Kanessa. Almost a year after a freak eye injury that seemed to heal, Kanessa suddenly got sick. At first, it looked like a simple virus. But within days, things escalated fast.
Kaylee shares what it was like trying to make sense of symptoms that didn't quite add up. Normal test results. A child who seemed okay one minute and not the next. And that moment when everything changed with one scan.
From there, their world shifted quickly. A brain bleed. A diagnosis of bacterial meningitis. Emergency surgery. A 40-day hospital stay. Kaylee talks about what it took to keep going through all of it, while also caring for a newborn and being away from her other child.
She also shares how she supported Kanessa through it all. Being honest about what was happening. Preparing her for procedures. Letting her ask questions. And leaning on Child Life in a way that made a huge difference for both of them.
If you've ever wondered if you're overreacting or if you should push for more answers, this episode will stay with you. Kaylee's story is a reminder to trust yourself and keep advocating.
This episode is sponsored by Gebauer PainEase®. We're so grateful for their support. To learn more about this product, visit their website.
This is our 300th episode, which feels pretty surreal. We're so grateful you're here.
Special Giveaway ☕️Your support means so much to us, and we're truly grateful for this community. As a small thank you, we're offering a $10 Starbucks gift card to the first 20 listeners who leave a review. If the podcast has made an impact on you, we'd love to hear your thoughts. Simply screenshot your review and email it to [email protected] to claim your gift. Thank you for being part of this journey with us 💛

Resources & Ways to Connect
 Connect with Kaleigh on Instagram
Facebook Meningitis Support Group
 
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Medical information provided is not a substitute for professional advice—please consult your care team.


Keywords:
bacterial meningitis child story, pediatric brain hemorrhage, delayed diagnosis child illness, parenting through medical trauma, child life support hospital, pediatric emergency story, advocating for your child medical care, cochlear implant child, hearing loss after meningitis, navigating pediatric hospitalization, medical parent journey, trusting parental instincts

What happens when your child already senses something life-changing—before anyone has found the words to say it out loud?
When serious illness enters a family, children often understand more than we realize. And for caregivers, the challenge becomes not only navigating medical decisions, but also finding the right way to support their children through it all.
This week, Katie sits down with Anna Lonon, founder of the Lonon Foundation, to share her family's story of navigating cancer when her husband Michael was diagnosed with stage three head and neck cancer at just 29 years old. While raising a young son and later welcoming a newborn daughter, Anna faced the unimaginable reality of caregiving, loss, and parenting through profound uncertainty.
Anna opens up about what it looked like to balance hospital visits, therapies, and daily life, and the emotional toll of making impossible decisions while trying to hold her family together. She shares powerful moments, including the realization that her young son understood far more about his father's illness than anyone had explained, and how that shaped the way she approached communication in the years that followed.
After later facing her own cancer diagnosis, Anna made a different choice—seeking out child life support early to guide honest, developmentally appropriate conversations with her children. Through her experiences, she highlights the importance of listening to children's cues, trusting your instincts as a parent, and creating space for both grief and resilience.
If you've ever struggled with how to talk to your child about illness, felt overwhelmed as a caregiver, or wondered how to support your family through uncertainty, this conversation offers validation, insight, and hope.
This episode is sponsored by Gebauer PainEase®. We extend our sincere gratitude to Gebauer PainEase® for supporting this episode. To learn more about this product, visit their website.
Resources from today's episode:
Visit the Lonon Foundation website
Pickles Group
Wonders & Worries
Connect with Us
Subscribe: Never miss an episode on Apple Podcasts or Spotify.



Visit insidethechildrenshospital.com to search stories and episodes easily



Follow us on Instagram for updates and opportunities to connect with other parents



Download SupportSpot: receive Child Life tools at your fingertips.



Leave a Review: It helps other families find us and access our resources!

Medical information provided is not a substitute for professional advice—please consult your care team.
 
Keywords:
parent cancer child support, talking to kids about cancer, caregiver mental load, parenting through illness, child life specialist support, family coping with cancer, grief and parenting, pediatric emotional support, supporting children through loss, caregiver burnout, trauma-informed parenting, childhood understanding of illness, cancer impact on families

What happens when your instincts tell you something is wrong—but you're dismissed again and again?
For many parents, the journey to a diagnosis begins with a gut feeling—and the courage to persist in seeking answers.
This week, Katie sits down with Nikki McIntosh, author and advocate, to share the story of her son Miles, who was diagnosed with spinal muscular atrophy (SMA) at just 18 months old. After noticing delays in his ability to stand and bear weight, Nikki followed her instincts despite initial dismissal—ultimately leading to a life-changing diagnosis.
Nikki shares what those early days looked like—from navigating testing and procedures to receiving the diagnosis that changed everything. She opens up about the grief, fear, and urgency that followed, and how she quickly stepped into the role of advocate, building a care team and learning how to navigate complex medical systems in real time.. 
If you've ever questioned your instincts or felt lost navigating a diagnosis, this conversation offers validation, practical guidance, and hope.
This episode is sponsored by Gebauer PainEase®. We extend our sincere gratitude to Gebauer PainEase® for supporting this episode. To learn more about this product, visit their website.
 
Resources & Ways to Connect
Visit Nikki's Website

Find her book wherever books are sold (Amazon, Barnes & Noble, Target, and more)



Helpful Resources Mentioned
National Organization for Rare Disorders (NORD)



Global Genes



Cure SMA (patient advocacy organization)



 
Connect with Us
Subscribe: Never miss an episode on Apple Podcasts or Spotify.



Visit insidethechildrenshospital.com to search stories and episodes easily



Follow us on Instagram for updates and opportunities to connect with other parents



Download SupportSpot: receive Child Life tools at your fingertips.



Leave a Review: It helps other families find us and access our resources!

Medical information provided is not a substitute for professional advice—please consult your care team.
Keywords:
spinal muscular atrophy, SMA child story, rare disease diagnosis child, delayed milestones baby, parenting medically complex child, rare disease advocacy, navigating pediatric diagnosis, EMG test child, pediatric neuromuscular disease, child life coping tools, supporting child through medical tests, rare disease parent support, medical parent journey, hope after diagnosis

Within minutes of arriving at the hospital, Brady and his wife were told their newborn daughter had suffered a severe brain injury.
In this episode of Inside the Children's Hospital, Katie sits down with Brady Crandall, founder of Youth Crews, to share his family's journey following a diagnosis of hypoxic ischemic encephalopathy (HIE).
What began as a routine pregnancy quickly turned into an emergency delivery, NICU stay, and a new reality as parents of a medically complex child.
Brady opens up about:
The shock and uncertainty of those early days
Navigating life as a "medical dad."
The balance of grief and joy that often coexist
How early intervention and community shaped their path
Through this experience, Brady recognized a gap many families face: a lack of dignified, age-appropriate products for children with disabilities.
That realization led to the creation of Youth Crews—a brand focused on comfort, dignity, and rethinking what medical products can look like for kids.
If you've ever found yourself wishing something existed to better support your child—or felt the pull to create change—this episode will leave you feeling seen, understood, and inspired.
This episode is sponsored by Gebauer PainEase®We extend our sincere gratitude to Gebauer PainEase® for supporting this episode. To learn more about this product, visit their website.
Resources & Ways to Connect
Learn more about Youth Crews and their mission to create dignified products for kids with disabilities

Follow Youth Crews on Instagram



Mentioned in This Episode
Hope for HIE community



Anchor Center for Blind Children (early intervention services)



Driven by Purpose Podcast
Connect with us! 
Subscribe: Never miss an episode on Apple Podcasts or Spotify.



Visit insidethechildrenshospital.com to search stories and episodes easily



Follow us on Instagram for updates and opportunities to connect with other parents



Download SupportSpot: receive Child Life tools at your fingertips.



Leave a Review: It helps other families find us and access our resources!

 
Disclaimer:
Medical information shared in this episode is not a substitute for professional advice. Please consult your care team for guidance specific to your child.

Keywords:
hypoxic ischemic encephalopathy, HIE baby story, NICU brain injury, medical dad perspective, parenting child with disabilities, pediatric brain injury journey, adaptive products for kids, inclusive design children, youth crews diapers, special needs parenting support, early intervention services, disability advocacy parenting, medically complex child parenting, child life support tools

How do you prepare a child for surgery and build trust with their medical team? This episode explores how families and healthcare providers can work together to support children through procedures like tonsillectomy and other medical challenges.
This week's guest, Dr. Tali Lando, shares her perspective as a pediatric ENT surgeon, author, and mom of three teenage daughters. She and Katie discuss what it's really like for families navigating medical care with complex kids and how parents can advocate effectively while still building strong partnerships with their child's care team.
If you've ever wondered how to build trust with your child's doctor, prepare your child for surgery, or understand the perspective of the people caring for your child, this episode offers meaningful insight and reassurance. Dr. Lando's message is clear: the best outcomes happen when families and providers work together as partners.
We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website.
Resources & Ways to Connect:
Book: Breathless: Surgical Tales from the Brink and Back By Dr. Tali Lando
 Available on Amazon
Website 
Instagram
Connect with us! 
Subscribe: Never miss an episode on Apple Podcasts or Spotify.



Visit insidethechildrenshospital.com to search stories and episodes easily



Follow us on Instagram for updates and opportunities to connect with other parents



Download SupportSpot: receive Child Life tools at your fingertips.



Leave a Review: It helps other families find us and access our resources!

Medical information provided is not a substitute for professional advice—please consult your care team.
Keywords: pediatric ENT surgeon, tonsillectomy preparation for kids, preparing children for surgery, pediatric airway specialist, parenting medically complex children, doctor-patient partnership, advocating for your child in healthcare, pediatric surgery preparation, airway disorders in children, Breathless Dr. Tali Lando, medical memoir pediatric surgeon, supporting families in pediatric healthcare