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Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

Katie Taylor, Certified Child Life Specialist
Child Life On Call |  Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
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  • Surgery for Pediatric Drug-Resistant Epilepsy and Infantile Spasms (278) - Audrey's Story
    Join us for an incredibly candid and informative conversation with Audrey Vernick, a passionate advocate and the Director of Patient and Family Advocacy for the Pediatric Epilepsy Surgery Alliance. Audrey shares the powerful 21-year journey of her son, Bennett, who suffered a stroke in utero and was later diagnosed with the catastrophic epilepsy known as Infantile Spasms. Audrey recounts the emotional process from the difficult labor and early concerns dismissed as normal reflexes, to the terrifying moment she saw his MRI and realized half of his brain was black due to a massive stroke. This episode is an essential listen for any parent navigating a serious pediatric diagnosis, especially those dealing with seizures. Audrey shares her family's ultimate decision to pursue a hemispherectomy after two years of failed medications, and the immediate, miraculous developmental explosion in her son's language and physical abilities post-surgery. Key Takeaways and Actionable Advice Trust Your Parental Instinct: If you think something is wrong with your child's movements, something probably is. Demand a Specialist: If you suspect Infantile Spasms, go to the ER and demand to speak to a neurologist or epileptologist. Request video EEG monitoring. Video & Log Everything: Record videos of suspicious movements and log details (time, duration, what you observed) to help clinicians with diagnosis and treatment planning. The Difference Between a Consult and Surgery: A surgical consult is not a surgery. Referring for a pre-surgical workup opens up a new toolbox of solutions and gives you access to a world-renowned team of specialists for a more detailed look at your child's case. Drug-Resistant Epilepsy (DRE): Epilepsy is considered DRE if a child has uncontrolled seizures after appropriately failing two seizure medications. This increases the risk of SUDEP (Sudden Unexplained Death due to Epilepsy). Decision-Making: Understanding your partner's decision-making style is crucial when navigating complex medical choices. Guest Information & Resources Guest: Audrey Vernick, Director of Patient and Family Advocacy at the Pediatric Epilepsy Surgery Alliance. Organization: Pediatric Epilepsy Surgery Alliance Website: epilepsysurgeryalliance.org. Resources: Offers a Parent Support Navigator Program (trained peers), financial aid for travel to a Level Four epilepsy center for pre-surgical workups, webinars, and more. Infantile Spasms Resource: Audrey also mentions the Infantile Spasms Action Network for resources on recognizing and acting on infantile spasms.   Time Stamp Description Key Information 00:00:43 Critical Advice: Surgery Consult vs. Surgery Audrey shares the core message that a surgery consult is different than a surgery, and there is no harm in seeking a consultation for any diagnosis. 00:01:54 Bennett's Diagnosis and Surgery Audrey introduces her son, Bennett (21), who had a stroke in utero, infantile spasms, and ultimately a hemispherectomy. 00:04:50 The Early Months: Colic vs. Seizures Audrey describes the first five months, where unusual movements and fussiness were initially dismissed as normal reflexes and colic by her pediatrician. 00:12:08 Emergency EEG & Stroke Discovery The night she called a new neurologist, they were admitted for a 48-hour video EEG monitoring. The next day, an MRI revealed a massive stroke in the right hemisphere. 00:14:50 Infantile Spasms: Recognize the Signs Audrey, as a leader of the PESA, stresses that Infantile Spasms is a medical emergency. She describes the signs: head drop/nod, flexing, and subtle movements that happen in clusters. 00:17:10 Advocacy: How to Get Help Advice for parents: Take videos, take logs, and at the ER, demand to see a neurologist or epileptologist. 00:22:15 The Surgical Seed is Planted Bennett's first neurologist mentioned a hemispherectomy when he was only five months old, which her husband immediately dismissed, but planted a "seed" for future research. 00:24:09 Choosing Surgery and the "Elmo Song" Miracle The family begged for surgery and two days later Bennett had his hemispherectomy. Two weeks later on the plane home, Bennett, whose speech was suppressed, sang the entire Elmo song, signaling the impact the seizures had been having. 00:30:52 Defining Drug-Resistant Epilepsy (DRE) DRE is when a child has seizures after failing two appropriately dosed medications. DRE is harmful to development and carries the highest risk of SUDEP (Sudden Unexplained Death due to Epilepsy). 00:42:55 Final Message: Trust Yourself Audrey's final, powerful advice to parents: You are the expert in your own child; trust yourself and use that expertise as a tool on your journey.   Support the Host & Show If you found value in this conversation, please check out host Katie Taylor's work and community resources: Join Katie Taylor's Substack for in-depth insights and articles: Join here Get the SupportSpot App—a helpful tool to support your child through their healthcare journey: Check it out The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child is experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.  
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  • A Speech Language Pathologist's Tips to Helping Your Child Thrive (277)-Luba's Story
    "The excitement that the kids feel when they are seeing you... and they know today's session with Ms. Luba and they can't wait to see you." - Luba Kaplan When a child enters the medical system, parents often meet many specialists beyond doctors and nurses, including Speech-Language Pathologists (SLP). These professionals are vital members of the healthcare team, doing more than just helping with speech. SLPs, as Luba Kaplan explains, also explains how they look at every area of the child's development to ensure children are being fully supported. In this episode, we introduce Luba Kaplan, a passionate SLP, Oral Myofunction Therapist, and mother of three who is the visionary behind Kidology. Celebrating 10 years in private practice, Luba has made it her mission to bridge gaps in access to therapy. She even created the Therapy Bus—a half-size school bus that travels to families who can't leave home or have transportation issues. About Our Guest: Luba Kaplan, SLP Luba Kaplan is a Speech-Language Pathologist and Oral Myofunction Therapist. As the founder and owner of Kidology, she has built a practice that offers a multidisciplinary, team approach to therapy, including Speech, Occupational, Physical, and Behavioral services. Luba is driven by a deep passion for helping families achieve change and is dedicated to cancer research in honor of her mother, Angela, who worked in oncology research for 25 years. Luba on Social Media: TikTok, Instagram, Facebook: @KidologyInc (KIDOLOGYINC) YouTube Channel: Find Kidology's content on YouTube Key SLP Insights for Medical Parents Luba shares crucial advice for working effectively with a Speech-Language Pathologist: Build Strong Rapport: Share everything that is going on in your child's life, even seemingly small struggles like a supermarket meltdown. The more the provider knows, the more they can help. Look for a Global Approach: Seek a provider who utilizes a multidisciplinary, team approach and is willing to screen for or refer to other needed services (OT, PT, behavioral services). Early Intervention is Key: Don't wait or assume your child will simply "grow out of it.". Addressing issues sooner, not later, can put your child ahead. Ensure Family Alignment: Everyone in the child's life (parents, grandparents, etc.) must be on the same page with the therapy goals to ensure the proper foundation for progress. Otherwise, therapy won't work. Trust the Independent Session: While parental presence is key in a hospital setting, giving your child space to learn independently in a non-threatening environment allows them to develop their own voice and thrive with the therapist. Stay Committed: Stick with the therapy program even when you think your child is "okay". Commitment is essential for your child to be better off post-program.   Episode Timeline Highlights 00:00: Introduction to the role of a Speech-Language Pathologist. 01:00: Introducing Luba Kaplan, the visionary behind Kidology and the innovative Therapy Bus. 02:30: Luba's passion for change and her personal connection to cancer research. 06:00: Tips for parents on finding an impactful provider and the necessity of sharing full history. 09:30: Navigating the system and the need for a team approach in therapy. 11:00: Strategies for carryover at home: portals, homework, and getting the whole family on the same page. 15:45: The difference between presence in an acute trauma setting (hospital) vs. a non-threatening environment (therapy clinic). 19:30: The growth of Kidology: from one suburban office to two central clinics with play gyms. 22:00: Final takeaways: the importance of commitment and not delaying intervention. Support Our Host & Show Child life specialists are experts who help families navigate the overwhelming and confusing world of healthcare. Now, you can access these valuable tools and resources outside of the hospital setting through the SupportSpot App. Parents, get empowered! The SupportSpot App provides tools to: Understand and explain medical procedures to your child. Help your child feel less anxious. Feel informed and confident in your child's healthcare journey Join Katie Taylor's Substack for in-depth insights and articles: Join here Child Life Specialists- join the circle. There is a seat here for you to recieve support, professional development, and access to clinical supervision.    🌟 Special Thank You for Our Listeners! 🎉 We're giving you free access to our most popular pediatric masterclasses — How to Prepare, Support, and Respond to Your Child During Shots, Blood Draws, and Vaccines and How to Use Comfort Positioning in Pediatrics — a $250 value, completely free! All you have to do is leave a written review of the Child Life On Call podcast on Apple Podcasts or Spotify, then email a screenshot of your review to [email protected]. Once we receive it, you'll get instant access to both courses — no strings attached. It's our way of saying thank you for listening and helping more parents discover our show. 💛 The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child is experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provide
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  • From Early Diagnosis to the Power of Community and Humor in Type 1 Diabetes (276)- Stacey's Story
    When Stacey's toddler was diagnosed with Type 1 diabetes, her family's world turned upside down. In this episode, she shares the early warning signs, the struggle of those first two weeks of injections, and how humor and community turned fear into resilience. Parents will gain hope, advocacy tips, and coping strategies for managing a chronic illness diagnosis.  What You'll Hear How Stacey recognized the 4 Ts of diabetes: Thirsty, Tired, Thinner, Toilet The reality of hospitalization, finger sticks, and injections with a toddler Coping strategies: medical play, humor, and routines that work The power of community and rejecting "perfect parenting" Building advocacy through Diabetes Connections and The World's Worst Diabetes Mom About Stacey Stacey Simms is an award-winning broadcaster, speaker, and author of The World's Worst Diabetes Mom. Since 2015, she has hosted Diabetes Connections, offering real stories and resources for the Type 1 community. 🔗 Diabetes Connections 🔗 Instagram @staceysimms Key Takeaways Advocate for more than a finger stick when symptoms appear Medical play & humor ease children's anxiety about procedures There's no "perfect parent"—safe and happy is enough Community matters, but it's okay to choose your people wisely Timestamps 00:00 – Introduction & Stacey's background 02:00 – Early signs of Type 1 diabetes (the 4 Ts) 06:00 – Hospital stay and first injections 10:00 – The hardest two weeks: shots, tears, and routine 15:00 – Teaching kids about diabetes as they grow 18:00 – Humor, medical play, and coping strategies 22:00 – Building Diabetes Connections & Moms' Night Out 25:00 – Lessons Stacey learned about herself 27:00 – The myth of perfect parenting   Support the Host & Show If you found value in this conversation, please check out host Katie Taylor's work and community resources: Join Katie Taylor's Substack for in-depth insights and articles: Join here Get the SupportSpot App—a helpful tool to support your child through their healthcare journey: Check it out Listen & Subscribe!    🌟 Special Thank You for Our Listeners! 🎉 We're giving you free access to our most popular pediatric masterclasses — How to Prepare, Support, and Respond to Your Child During Shots, Blood Draws, and Vaccines and How to Use Comfort Positioning in Pediatrics — a $250 value, completely free! All you have to do is leave a written review of the Child Life On Call podcast on Apple Podcasts or Spotify, then email a screenshot of your review to [email protected]. Once we receive it, you'll get instant access to both courses — no strings attached. It's our way of saying thank you for listening and helping more parents discover our show. 💛 The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child is experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.
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  • NICU, Down syndrome and Infant Loss: A Grief Story and Children's Book( 275) - Teejay + Jon's Story
    In this incredibly personal and moving episode, we sit down with Teejay and Jon, the authors of the gentle children's book Clemence, to share the full, raw story of their daughter, Nadiya. Their journey began with an unexpected connection—a transatlantic online romance between Teejay in Australia and Jon in Canada—that quickly turned into a marriage grounded in a shared life and purpose. With Teejay's extensive background in early childhood development and their experience fostering a young man with Down syndrome, they felt prepared when Nadiya was diagnosed with Trisomy 21 (Down syndrome) early in the pregnancy. However, Nadiya's complications were severe: a complete AVSD (Atrioventricular Septal Defect), a heart condition that made survival a constant battle. Teejay and Jon open up about the grueling reality of Nadiya's three-month, extended NICU stay. They speak candidly about the sheer exhaustion, the mental toll of the incessant alarms and machine noise, and the profound isolation of making life-and-death decisions under unimaginable pressure.  We explore the difficult but necessary truth of grieving alongside a partner who processes loss in a completely different way. Jon, an extrovert, sought normalcy and company, while Teejay, an introvert, needed space and quiet isolation. They explain how establishing mutual respect and seeking professional counseling were the key foundations that saved their marriage during this seismic time. Finally, they share the powerful mission behind their book, Clemence. Written to honor Nadiya's memory, it provides a crucial tool for families, helping them talk to children about baby sibling loss. They reveal plans for a sequel to address the unique grief of the "neglected mourners"—the subsequent children born after a loss who never met their older sibling. This conversation is an essential listen for anyone in the NICU community, processing loss, or seeking resources for pediatric grief support. Note: We recognize this episode addresses Infant and Pregnancy Loss Awareness. We stand with all families who have experienced loss and hope this conversation brings comfort and community. Episode Highlights & Timestamps Time Topic 00:05:48 Nadiya's Diagnosis: Trisomy 21 and the severe complete AVSD Heart Condition. 00:07:07 The NICU Reality: Coping with the three-month extended stay and constant medical crisis. 00:11:05 Profound Kindness: The stranger's DoorDash order that helped them survive the crisis. 00:13:28 Nadiya's Spirit: Her curiosity, determination, and "badass" personality that charmed the nurses. 00:22:10 Grief in Marriage: Navigating different coping styles (Introvert vs. Extrovert) to stay together. 00:24:25 What Helps? The power of presence and what to say (and what NOT to say) to grieving parents. 00:30:46 A Continuing Legacy: Writing the sequel for Clemence to support subsequent siblings. Connect & Resources Connect with Authors Teejay & Jon: You can find their children's grief book, Clemence, available on [Amazon, Barnes & Noble, Indigo (Canada), and all major book retailers]. Support & Grief Resources: For additional support and resources mentioned in the episode, please visit: Canuck Place Children's Hospice  Kids Grief Support (Jessica Correnti)  Support the Host & Show If you found value in this conversation, please check out host Katie Taylor's work and community resources: Join Katie Taylor's Substack for in-depth insights and articles: Join here Find community and support with the SupportSpot App (a helpful resource for organizing and receiving support during difficult times): Check it out Listen & Subscribe!  🌟 Special Thank You for Our Listeners! 🎉 We're giving you free access to our most popular pediatric masterclasses — How to Prepare, Support, and Respond to Your Child During Shots, Blood Draws, and Vaccines and How to Use Comfort Positioning in Pediatrics — a $250 value, completely free! All you have to do is leave a written review of the Child Life On Call podcast on Apple Podcasts or Spotify, then email a screenshot of your review to [email protected]. Once we receive it, you'll get instant access to both courses — no strings attached. It's our way of saying thank you for listening and helping more parents discover our show. 💛 Disclaimer: The content of this podcast is for informational purposes only. The host and guests are not licensed therapists or medical doctors. Always consult with your child's qualified medical professional for advice specific to your family's situation.    
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  • US News Children's Hospital Rankings 2025: Why the BEST Outcomes Demand the Human Touch (with Ben Harder)
    Is the "best" hospital just about technology and surgical success? Ben Harder, the journalist who oversees the methodology and data for the U.S. News Best Children's Hospitals Rankings (2025), joins Katie to break down what truly defines quality in pediatric care. Ben shares his deeply personal family story—a tragedy 50 years in the past that drives his commitment to making data-driven information accessible today. This episode is a crucial guide for parents, explaining the three core pillars of the rankings: structure/resources, processes of care, and patient outcomes. We dive into why essential human-focused services like Child Life Specialists, chaplains, and family advisory boards are included in the scorecard and how they influence the rankings. Ben illuminates the challenge faced by these vital "cost centers" in a revenue-driven healthcare system, and offers a powerful message: parents are the strongest possible advocates for their children, and they should use every resource available—including the U.S. News data—to make informed, collaborative choices for their child's care team. Guest Links U.S. News Best Children's Hospitals Rankings: All data is freely available for families to research hospitals by region and specialty. Website: US News Press Release Episode Highlights & Key Takeaways The Personal Motivation: Ben shares the heartbreaking story of his cousin, whose permanent brain injury after a heart surgery complication 50 years ago lacked the complete care team needed to ensure a good outcome—a void the U.S. News data is designed to fill today. The Three Pillars of Ranking: US News analyzes over 1,000 data points grouped into: 1) Resources/Structure (nurses, expertise, technology, child life services), 2) Processes of Care (following best practices, infection control), and 3) Outcomes (survival, length of stay, quality of life). The Honor Roll: The 2025 Honor Roll features the top 10 hospitals recognized for high performance across multiple specialties, including: Boston Children's Hospital, The Children's Hospital of Philadelphia (CHOP), Cincinnati Children's, Texas Children's Hospital, and others. A Piece of the Puzzle: The rankings are one resource to use alongside insurance coverage, geographic location, and most importantly, consulting your child's doctors and trusting your parental intuition. The Value of Human Support: Services like Child Life Specialists, support groups, and family advisory boards are included in the structural data points, serving as a motivator for hospitals to invest in comprehensive, family-centered care. Advocacy is Essential: Ben gives parents permission to advocate relentlessly, reminding them they know their child best. Collaborating with—not simply questioning—the care team can be life-saving. Chapters: Timestamp Topic 0:00 Ben Harder's Personal Connection to Hospital Rankings 1:03 The Official Launch of the U.S. News Best Children's Hospitals 2025 3:20 US News Honor Roll: The Top 10 Children's Hospitals 4:26 FREE COURSE Ad: Shots, Blood Draws & Comfort Positioning 5:35 Meet Ben Harder: Journalist, Father, and Best Hospitals Lead 7:59 The 3 Pillars of US News Ranking Methodology (1000+ Data Points) 11:37 The Role of Expert Work Groups in Defining Data 13:58 The Future of Family Expertise in Shaping Rankings 16:59 How Families Should Use the U.S. News Rankings 21:09 Why Child Life Services and Support Resources Matter in Rankings 25:12 Why Support Services are Overlooked: Revenue vs. Cost Centers 27:54 Ben Harder's Personal Story: The Tragic Need for Comprehensive Care 31:00 The Efficacy and Impact of Child Life Specialists 34:36 What Families Should Expect and Ask For: Advocacy Permission 38:23 Where to Find the U.S. News Best Children's Hospitals Rankings 38:58 Disclaimer   Resources for You 1. Unlock Two FREE Courses (Value $250+) We want to equip you to better support your child during medical experiences! Get our popular courses "How to Prepare, Support, and Respond to Your Child During Shots, Blood Draws, and Vaccines" AND "How to Use Comfort Positioning in Pediatrics" completely free. How to Get It: Leave a written review for the Child Life On Call podcast on Apple Podcasts or Spotify. Take a quick screenshot of your submitted review. Email the screenshot to: [email protected] 2. Connect with Child Life On Call Website: ChildLifeOnCall.com Instagram: @ChildLifeOnCall Disclaimer: The content of this podcast is for informational purposes only. The host and guests are not licensed therapists or medical doctors. Always consult with your child's qualified medical professional for advice specific to your family's situation.  
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