Inside the Children's Hospital shares real stories from parents, caregivers, and pediatric healthcare professionals navigating the emotional realities of caring for a hospitalized child with honesty, compassion, and hope.
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
Claim This Podcastby Katie Taylor, Certified Child Life Specialist
324 episodes
Updated Daily
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52
Podcast Authority
BetaFairBased on show quality, social media presence, reviews, charts, and more
Quality84
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Podcast Overview
Inside the Children's Hospital shares real stories from parents, caregivers, and pediatric healthcare professionals navigating the emotional realities of caring for a hospitalized child with honesty, compassion, and hope.
Language
🇺🇲
Publishing Since
5/11/2017
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52
Podcast Authority
BetaFairBased on show quality, social media presence, reviews, charts, and more
Quality84
Social100
YouTube0
Engagement0
7
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excellent
Episode Length
45 minutes
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Recent Episodes
August 12, 2026
When You Become Your Child's Advocate Overnight
<p class="isSelectedEnd">What happens when the child you've dreamed of suddenly receives a diagnosis you've never even heard of? For Deborah, it was Angelman syndrome.</p> <p class="isSelectedEnd">In this episode of Inside the Children's Hospital Podcast, Katie Taylor sits down with <strong>Deborah Trejo, Art Therapist</strong>, to share the powerful story of her daughter Maya's journey to an Angelman syndrome diagnosis. After months of feeding difficulties, developmental delays, seizures, and countless unanswered questions, Deborah and her family finally received a diagnosis just one day after Maya's first birthday.</p> <p class="isSelectedEnd">Deborah opens up about the emotional realities of medical motherhood—from surviving the uncertainty of the diagnostic process to learning how grief and joy can exist together. She shares how finding community through the Angelman Syndrome Foundation, connecting with other parents, and embracing art as a tool for healing helped her navigate one of the most difficult seasons of her life.</p> <p class="isSelectedEnd">As both a mother and an art therapist, Deborah also reflects on maintaining her identity beyond caregiving, advocating fiercely for her daughter's needs, and celebrating every milestone along the way. Her story is an honest reminder that while a rare diagnosis may change the path a family expected, it can also reveal extraordinary resilience, purpose, and hope.</p> <p class="isSelectedEnd">Whether you're a parent navigating a rare diagnosis, caring for a child with complex medical needs, or a healthcare professional supporting families through uncertainty, this episode offers compassionate encouragement and a reminder that you are never alone.</p> <h2>In This Episode, We Discuss:</h2> <ul data-spread="false"> <li>Deborah's journey from children's hospital volunteer to art therapist</li> <li>Maya's first year and the road to an Angelman syndrome diagnosis</li> <li>Early signs including feeding difficulties, developmental delays, and seizures</li> <li>The emotional experience of waiting for answers after neurological testing</li> <li>Receiving a rare diagnosis and processing grief as a family</li> <li>The importance of connecting with other parents and diagnosis-specific support organizations</li> <li>How art became a source of healing and resilience</li> <li>Balancing motherhood, career, and personal identity</li> <li>Becoming a strong advocate for a child with complex medical needs</li> <li>Finding joy while navigating the realities of medical parenting</li> </ul> <h2>Episode Timestamps</h2> <p class="isSelectedEnd"><strong>00:00</strong> Meet Deborah Trejo</p> <p class="isSelectedEnd"><strong>01:30</strong> Maya's first year and the journey to diagnosis</p> <p class="isSelectedEnd"><strong>05:30</strong> Birth during COVID and early medical concerns</p> <p class="isSelectedEnd"><strong>08:00</strong> Developmental delays, seizures, and meeting neurology</p> <p class="isSelectedEnd"><strong>11:25</strong> Receiving the Angelman syndrome diagnosis</p> <p class="isSelectedEnd"><strong>13:00</strong> Processing grief and surviving the unknown</p> <p class="isSelectedEnd"><strong>19:15</strong> Becoming an art therapist through lived experience</p> <p class="isSelectedEnd"><strong>21:15</strong> Holding onto identity beyond medical motherhood</p> <p class="isSelectedEnd"><strong>24:00</strong> The Angelman Syndrome Foundation and family support</p> <p class="isSelectedEnd"><strong>26:50</strong> Learning to ask for help</p> <p class="isSelectedEnd"><strong>28:45</strong> Advocacy, milestones, and celebrating progress</p> <p class="isSelectedEnd"><strong>31:55</strong> Maya's joy and final reflections</p> <h2>Resources Mentioned</h2> <ul data-spread="false"> <li><a href="https://angelman.org/">Angelman Syndrome Foundation</a></li> <li data-section-id="zitqba" data-start="183" data-end="267"> <strong data-start="185" data-end="223">Angelman Syndrome Foundation (ASF)</strong> — this is the organization's official name.</li> <li data-section-id="hazifk" data-start="268" data-end="454"> <strong data-start="270" data-end="326">Foundation for Angelman Syndrome Therapeutics (FAST)</strong> — another major Angelman organization, particularly focused on research and therapeutics.</li> <li data-section-id="135wf7p" data-start="455" data-end="719"> <strong data-start="457" data-end="483">First 100 Days Journey</strong> </li> <li data-section-id="11ayfw4" data-start="720" data-end="988"> <strong data-start="722" data-end="746">ASF Family Champions</strong> </li> <li data-section-id="gj818v" data-start="1117" data-end="1308"> <strong data-start="1119" data-end="1144">Clinical Care Toolkit</strong> </li> <li data-section-id="wwf2pk" data-start="1309" data-end="1550"> <strong data-start="1311" data-end="1354">NIH/NINDS Angelman syndrome information</strong></li> </ul> <p><strong>Connect with Us</strong></p> <ul> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation">Instagram: <a href= "https://www.instagram.com/childlifeoncall/">@childlifeoncall</a> + <a href="https://www.instagram.com/insidethechildrenshospital/">@insidethechildrenshospital</a></p> </li> <li dir="ltr" aria-level="1">Youtube: <a href= "https://www.youtube.com/@childlifeoncall">@childlifeoncall</a></li> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation">Subscribe: Never miss an episode on <a href= "https://podcasts.apple.com/us/podcast/inside-the-childrens-hospital/id1235856283">Apple Podcasts</a> or <a href= "https://open.spotify.com/show/0yS0xcmc2dB9O9yQjose5u">Spotify.</a></p> </li> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation">Visit <a href= "http://insidethechildrenshospital.com/">insidethechildrenshospital.com</a> to search stories and episodes easily</p> </li> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation">Leave a Review: It helps other families find us and access our resources</p> </li> </ul> <p class="isSelectedEnd">Medical information shared in this episode is not a substitute for professional medical advice. Please consult your healthcare team for guidance specific to your child and family.</p> <p><strong>Keywords:</strong> Angelman syndrome, Angelman syndrome diagnosis, rare disease, rare genetic disorder, developmental delays, seizures in children, medical motherhood, caregiver support, parenting a child with disabilities, pediatric neurology, rare diagnosis, art therapy, family centered care, child life specialist, medically complex children, disability advocacy, parent support, pediatric healthcare, Inside the Children's Hospital Podcast</p>
August 5, 2026
Doctor Visits, Diagnoses, and Difficult Conversations: A Parent's Guide to Knowing What to Say
<p dir="ltr">What do you do when your child receives a diagnosis and your mind suddenly goes blank?</p> <p dir="ltr">Whether you're hearing difficult news for the first time or preparing your child for a medical procedure, knowing what to ask—and how to support your child—can feel overwhelming.</p> <p dir="ltr">In this episode of Inside the Children's Hospital, Katie Taylor, Certified Child Life Specialist, is joined by Dr. Mona Amin, board-certified pediatrician, founder of <a href= "https://pedsdoctalk.com/">PedsDocTalk,</a> and Chief Medical Officer at <a href="https://www.heypoppins.com/">Poppins</a>, for an honest conversation about helping families navigate some of the hardest moments in healthcare.</p> <p dir="ltr">Together, they share practical strategies for asking the right questions after a diagnosis, preparing children for medical procedures in developmentally appropriate ways, and supporting both parents and children through fear, uncertainty, and overwhelming emotions. Dr. Mona also shares her own experience as both a pediatrician and the mother of a child who experienced a neonatal stroke, offering a unique perspective from both sides of the hospital bed.</p> <p dir="ltr">Whether your child is facing a new diagnosis, an upcoming surgery, blood work, vaccinations, or ongoing medical care, this episode will leave you feeling more prepared, informed, and empowered.</p> <h2 dir="ltr">In This Episode:</h2> <p dir="ltr">00:00 – Why difficult medical conversations can leave parents feeling overwhelmed<br /> 2:12 – Meet Dr. Mona Amin and her work supporting families through PedsDocTalk and Poppins<br /> 5:02 – How virtual pediatric care is helping families access support sooner<br /> 6:53 – What parents should ask after receiving a new diagnosis<br /> 8:16 – Why your brain "goes offline" during difficult news<br /> 13:42 – How to pause, regulate emotions, and advocate for your child<br /> 18:31 – Should parents Google a diagnosis? How to find trustworthy information<br /> 23:15 – The importance of hope while navigating uncertainty<br /> 31:21 – How children understand illness differently at every developmental stage<br /> 35:57 – Preparing toddlers and preschoolers for medical experiences<br /> 39:38 – Supporting school-age children through needles, procedures, and fear of pain<br /> 42:38 – Why you should never use the doctor as a threat<br /> 44:00 – Preparing children for blood draws, MRIs, vaccines, and procedures<br /> 46:23 – What to do when your child is completely dysregulated during a medical procedure<br /> 52:18 – Comfort positioning, honest communication, and building trust with children<br /> 56:07 – Helping children express big feelings while remaining their safe place</p> <h2 dir="ltr">You'll Learn:</h2> <ul> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation">The most important questions to ask after a new diagnosis</p> </li> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation">How to stay grounded when emotions take over</p> </li> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation">Developmentally appropriate ways to explain illness to children</p> </li> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation">How to prepare kids for medical procedures without increasing anxiety</p> </li> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation">Why honest language builds trust with children</p> </li> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation">How to respond when your child is scared or dysregulated</p> </li> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation">Why connection matters more than perfection</p> </li> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation">Ways to help children develop confidence during medical experiences</p> </li> </ul> <h2 dir="ltr">Resources Mentioned</h2> <ul> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation"><a href= "https://pedsdoctalk.com/">PedsDocTalk</a> by Dr. Mona Amin</p> </li> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation"><a href= "https://www.heypoppins.com/">Poppins Pediatric Care</a> (Use code ChildLifeOnCall for one month of FREE parent coaching or pediatric medical care where available.)</p> </li> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation"><a href= "https://childlifeoncall.com/comfort-positioning-guide/">Free Comfort Position Guide</a> from Child Life On Call</p> </li> </ul> <p dir="ltr"> </p> <p dir="ltr"> </p> <p dir="ltr">Connect with Us</p> <ul> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation">Instagram: <a href= "https://www.instagram.com/childlifeoncall/">@childlifeoncall</a> + <a href= "https://www.instagram.com/insidethechildrenshospital/">@insidethechildrenshospital</a></p> </li> <li dir="ltr" aria-level="1"><a href= "https://www.youtube.com/@childlifeoncall">YouTube</a>- All episodes available in video format! </li> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation">Subscribe: Never miss an episode on <a href= "https://podcasts.apple.com/us/podcast/inside-the-childrens-hospital/id1235856283"> Apple Podcasts</a> or <a href= "https://open.spotify.com/show/0yS0xcmc2dB9O9yQjose5u">Spotify.</a></p> </li> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation">Visit <a href= "http://insidethechildrenshospital.com/">insidethechildrenshospital.com</a> to search stories and episodes easily</p> </li> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation">Leave a Review: It helps other families find us and access our resources</p> </li> </ul> <p dir="ltr"> </p> <p dir="ltr">Medical information shared in this episode is not a substitute for professional medical advice. Please consult your care team for guidance specific to your child and family.</p> <p>Keywords: child medical diagnosis, pediatric diagnosis, child life specialist, Dr. Mona Amin, PedsDocTalk, preparing kids for medical procedures, talking to kids about illness, helping children cope with illness, questions to ask after a diagnosis, child receives a diagnosis, pediatrician advice, preparing kids for blood draws, preparing kids for vaccines, hospital anxiety in children, pediatric healthcare, family-centered care, medical parenting, supporting children through healthcare, pediatric patient education, parenting a medically complex child<br /> <strong id= "docs-internal-guid-6bf97586-7fff-8cdb-52fe-a9fa767e5bf9"><br /> </strong></p>
July 29, 2026
Prader-Willi Syndrome: Why Caregiving Moms Need Community and Support
<p dir="ltr">When your child receives a diagnosis, everything changes. In this heartfelt episode, Katie Taylor welcomes back Jessica Patay, founder of <a href= "https://www.wearebravetogether.org/">We Are Brave Together,</a> to discuss the emotional realities of caregiving, raising a son with Prader-Willi syndrome and autism, and why supporting the mental health of caregiving moms is essential.</p> <p dir="ltr">Jessica shares how a mentor mom transformed her own journey after her son's diagnosis and how that experience inspired her to create We Are Brave Together, a thriving community supporting thousands of caregiving mothers worldwide. She also introduces her newest book, <a href= "https://www.amazon.com/Suddenly-Brave-Together-We-Are/dp/B0GW2WKS7Q/ref=sr_1_1?crid=2YZF093FDC8BY&dib=eyJ2IjoiMSJ9.1NEgaejzKq6HsaAiIWYZ492AOIdVGyjI78S5t8l_aOg2PhuL0LcuFdfkPqFndpfX-6FpbjAj4sf4O2TwxOWyrZEqKOVgbst7_YHDb5XmqUk._YXz4tKmgOmSFvyq0hcBE2u0C3P5XnstflWpZN_WbWM&dib_tag=se&keywords=suddenly+brave+together&qid=1784732654&sprefix=suddenly+brave+togethe%2Caps%2C195&sr=8-1"> Suddenly Brave Together,</a> a collection of letters written by experienced caregiving moms to families navigating a new diagnosis.</p> <p dir="ltr">Together, Katie and Jessica explore the importance of community, finding hope through shared experiences, navigating the transition into adult healthcare, and why caregivers deserve just as much support as the children they care for.</p> <p dir="ltr">Whether you're parenting a child with a rare disease, disability, medical complexity, neurodivergence, or chronic illness, this conversation is a reminder that you never have to walk this journey alone.</p> <h3 dir="ltr">In This Episode:</h3> <p dir="ltr">1:58 – Meet Jessica Patay and her family's journey with Prader-Willi syndrome<br /> 5:45 – What is We Are Brave Together?<br /> 8:10 – Jessica's new book, Suddenly Brave Together<br /> 11:05 – The letter Jessica wrote to newly diagnosed moms<br /> 13:10 – Why caregiver mental health matters<br /> 15:55 – The mentor mom who changed everything<br /> 17:15 – How moms can become Connection Circle leaders<br /> 21:30 – Supporting moms navigating behavioral challenges<br /> 23:15 – Where to find Jessica's books and resources<br /> 24:15 – Transitioning from pediatric to adult healthcare<br /> 27:45 – Why caregivers still need a village after childhood<br /> 30:45 – Creating spaces where caregivers feel seen, not judged<br /> 32:45 – Why supporting moms strengthens the entire family</p> <h3 dir="ltr">Resources Mentioned</h3> <p dir="ltr">• We Are Brave Together: <a href= "https://www.wearebravetogether.org/">https://www.wearebravetogether.org<br /> </a> • Learn about Connection Circles and caregiver retreats<br /> • Suddenly Brave Together and Becoming Brave Together</p> <p><span style="font-size: 14pt;"><strong>Connect with Us</strong></span></p> <ul> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation">Instagram: <a href= "https://www.instagram.com/childlifeoncall/">@childlifeoncall</a> + <a href="https://www.instagram.com/insidethechildrenshospital/">@insidethechildrenshospital</a></p> </li> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation">Subscribe: Never miss an episode on <a href= "https://podcasts.apple.com/us/podcast/inside-the-childrens-hospital/id1235856283">Apple Podcasts</a> or <a href= "https://open.spotify.com/show/0yS0xcmc2dB9O9yQjose5u">Spotify.</a></p> </li> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation">Visit <a href= "http://insidethechildrenshospital.com/">insidethechildrenshospital.com</a> to search stories and episodes easily</p> </li> <li dir="ltr" aria-level="1"> <p dir="ltr" role="presentation">Leave a Review: It helps other families find us and access our resources</p> </li> </ul> <p>Medical information shared in this episode is not a substitute for professional medical advice. Please consult your care team for guidance specific to your child and family.<strong><br /></strong><br /> Keywords: </p> <div class="" data-turn-id-container= "request-6a5fe19e-5ae8-83ea-b880-f45b98367efe-1" data-is-intersecting="true"> <section class= "text-token-text-primary w-full focus:outline-none has-data-writing-block:pointer-events-none [&:has([data-writing-block])>*]:pointer-events-auto R6Vx5W_threadScrollVars scroll-mb-[calc(var(--scroll-root-safe-area-inset-bottom,0px)+var(--thread-response-height))] scroll-mt-[calc(var(--header-height)+min(200px,max(70px,20svh)))]" dir="auto" data-turn-id= "request-6a5fe19e-5ae8-83ea-b880-f45b98367efe-1" data-turn-id-container= "request-6a5fe19e-5ae8-83ea-b880-f45b98367efe-1" data-testid= "conversation-turn-8" data-turn="assistant"> <div class= "text-base my-auto mx-auto pb-15 [--thread-content-margin:var(--thread-content-margin-xs,calc(var(--spacing)*4))] @w-sm/main:[--thread-content-margin:var(--thread-content-margin-sm,calc(var(--spacing)*6))] @w-lg/main:[--thread-content-margin:var(--thread-content-margin-lg,calc(var(--spacing)*16))] px-(--thread-content-margin)"> <div class= "[--thread-content-max-width:40rem] @w-lg/main:[--thread-content-max-width:48rem] mx-auto max-w-(--thread-content-max-width) flex-1 group/turn-messages focus-visible:outline-hidden relative flex w-full min-w-0 flex-col agent-turn" data-conversation-screenshot-content=""> <div class="flex max-w-full flex-col gap-4 grow"> <div class= "min-h-8 text-message relative flex w-full flex-col items-end gap-2 text-start break-words whitespace-normal outline-none keyboard-focused:focus-ring [.text-message+&]:mt-1" dir="auto" tabindex="0" data-message-author-role="assistant" data-message-id="a32ae321-7b5f-4641-92ea-ac4930097968" data-message-model-slug="gpt-5-5" data-turn-start-message="true"> <div class="flex w-full flex-col gap-1 empty:hidden"> <div class= "markdown prose dark:prose-invert wrap-break-word w-full light markdown-new-styling"> <p data-start="0" data-end="502" data-is-last-node="" data-is-only-node="">Prader-Willi syndrome, We Are Brave Together, caregiver mental health, caregiving moms, special needs parenting, medically complex children, rare disease parenting, autism parenting, caregiver support, parent support community, new diagnosis support, disability parenting, family caregiving, pediatric to adult healthcare transition, Connection Circles, caregiver burnout, parenting after diagnosis, medically complex parenting, Jessica Patay, caregiving community</p> </div> </div> </div> </div> </div> </div> </section> </div> <p> </p>
324 total episodes available with 1 transcripts
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