Épisodes

  • Prader-Willi Syndrome, Motherhood & Finding Community Through Advocacy [REPOST] (253)- Jessica's Story

    Prader-Willi Syndrome, Motherhood & Finding Community Through Advocacy [REPOST] (253)- Jessica's Story
    May 7 2025
    📢 This is a special repost of one of our most heartfelt and insightful episodes. Whether this is your first time hearing Jessica’s story or a revisit, her perspective as a mom of a child with Prader-Willi Syndrome will stick with you. This month is also Prader- Willi Syndrome awareness month. What happens when a diagnosis changes everything you expected about motherhood? For Jessica Patay, it sparked a journey through fear, resilience, advocacy, and ultimately, the founding of an incredible nonprofit called We Are Brave Together. In this deeply moving episode, Jessica opens up about: ✅ Her son’s diagnosis with Prader-Willi Syndrome and the earliest signs ✅ The challenges of hypotonia, feeding tubes, and navigating early interventions ✅ How her family balances safety, structure, and joy with a life-altering genetic condition ✅ The impact of anxiety and food-seeking behaviors in PWS ✅ The emotional toll of parenting a medically complex child—and why self-care is essential ✅ Her mission to connect moms through retreats, support groups, and honest conversations Whether you're a parent of a child with a rare diagnosis, a caregiver, or a child life specialist, this episode offers comfort, validation, and powerful insight. Timestamps & Key Topics ⏱️ [00:00] – Meet Jessica Patay & Her Family A mom of three from California and founder of We Are Brave Together ⏱️ [04:00] – Ryan’s Birth and First Signs Something Wasn’t Right From a quiet newborn to a NICU stay, and the challenges of a delayed diagnosis ⏱️ [08:00] – Diagnosis: Prader-Willi Syndrome How a Google search and a persistent dad led to answers ⏱️ [10:00] – The Emotional Impact of Diagnosis The grief, the fog, and how Jessica slowly found strength ⏱️ [14:00] – Life with Feeding Tubes and Early Interventions Occupational, speech, and physical therapy in the early years ⏱️ [19:00] – Living with PWS: Hypotonia, Delayed Milestones, and Growth Hormone Ryan’s journey to walking at age three and building muscle ⏱️ [20:00] – When Food Becomes a Medical Emergency How the insatiable food drive in PWS shapes daily life—and safety plans ⏱️ [24:00] – Creating a Safe Home for Ryan Locked kitchens, food schedules, and adapting to his needs as he grows ⏱️ [26:00] – Rethinking Success: What Matters Most The shift from pushing academics to prioritizing happiness, safety, and stability ⏱️ [29:00] – Parenting Through Anxiety and Fatigue How PWS affects mental health—and how Jessica copes with it all ⏱️ [32:00] – Self-Care Without Shame Why letting go of perfection and choosing peace is essential ⏱️ [38:00] – Founding We Are Brave Together Jessica’s mission to combat caregiver isolation through connection and retreats ⏱️ [42:00] – How to Get Involved Join support groups, start a chapter, and access online resources ⏱️ [44:00] – What Ryan Has Taught Jessica A beautiful reflection on motherhood, perspective, and being changed for the better Resources & Links 🌐 Learn More: We Are Brave Together 📲 Follow Jessica on Instagram: @wearebravetogether 🎙️ Listen to Jessica’s Podcast: Brave Together with Jessica Patay 📘 Explore Support for PWS: Prader-Willi California Foundation 📱 Access Child Life Tools Anytime: SupportSpot App Share Your Thoughts! Were you moved by Jessica’s story? Are you a parent of a child with PWS or another complex diagnosis? We’d love to hear from you! Share this episode, tag us, and help other parents feel less alone. 🎧 Subscribe & Review: Every review helps more families find this supportive community. 🔗 Follow us on Instagram: @childlifeoncall 📩 Contact us: Host Katie Taylor and the team at SupportSpot 🎙️ Listen to More Episodes: Child Life On Call Podcast 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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    51 min
  • Two Sisters with Cystic Fibrosis - Laura's Story (252)

    Two Sisters with Cystic Fibrosis - Laura's Story (252)
    Apr 30 2025
    What would you do if both of your children were diagnosed with a life-threatening genetic disease—and there was no support system in place for parents like you? In this inspiring episode, Katie interviews Laura Bonnell, a former Detroit news reporter turned full-time advocate and nonprofit founder. After both of her daughters were diagnosed with cystic fibrosis (CF), Laura transformed her grief and determination into the Bonnell Foundation, providing real-time support to families across the U.S. who are navigating life with CF. In this powerful episode, we explore: ✅ How Laura pushed for her daughter’s diagnosis when doctors dismissed her instincts ✅ Why child life services were “among the best things” during hospitalizations ✅ What it’s like raising two daughters with cystic fibrosis in the same home ✅ The emotional toll of pretending “everything’s fine” as a medical parent ✅ How her foundation is providing financial relief, mentorship, and inspiration ✅ Why advocacy can take many forms—and how small actions can create significant change Whether you're a CF parent, a caregiver of a chronically ill child, or someone passionate about parent-led advocacy, this episode will move and motivate you. Timestamps & Key Topics ⏱️ [00:00] – The Power of Child Life Services How art, distraction, and support brought relief during hospital stays ⏱️ [03:00] – Meet Laura Bonnell From Detroit news reporter to cystic fibrosis advocate and nonprofit founder ⏱️ [06:00] – A Life-Altering Diagnosis How Laura’s instincts—and persistence—led to a CF diagnosis after months of dismissal ⏱️ [09:00] – Fighting for Answers & Processing the News Pulling over mid-assignment to receive the call—and deciding, that same day, to keep moving forward ⏱️ [12:00] – Advocacy from the Start Speaking publicly just weeks after diagnosis and discovering the emotional weight of her new reality ⏱️ [14:00] – Life with Two Children with CF Navigating work, marriage, and hospitalization rotations while trying to maintain “normalcy” ⏱️ [16:00] – School Accommodations & Advocacy Wins How brochures, IV poles, and enzymes in every classroom made private school possible ⏱️ [18:00] – The Hidden Truths of “Being Fine” Why Laura never told friends how hard it really was—and what she wishes she could’ve said ⏱️ [21:00] – Building Community & Finding Strength in Other Moms How hospital garden meetups and phone calls with CF parents created safe spaces ⏱️ [23:00] – Founding the Bonnell Foundation How a calendar and a vision turned into a national nonprofit serving families with CF ⏱️ [26:00] – What the Bonnell Foundation Offers From financial assistance and college scholarships to CF masterclasses and bilingual resources ⏱️ [28:00] – “Don’t F With Me”: Laura’s Strength as an Advocate Why she’ll knock on every door, from Capitol Hill to the hospital billing department ⏱️ [29:00] – Celebrating Her Daughters Emily’s resilience through hospitalizations and marathon training Molly’s fearless leap to study in London and become a sustainability changemaker Resources & Links 📌 Learn More About The Bonnell Foundation: www.thebonnellfoundation.org 📲 Follow Laura Bonnell: @thebonnellfoundation 📘 Apply for Scholarships & Financial Support: CF Support Programs 🎧 More Episodes: Child Life On Call Podcast Share Your Thoughts! Did Laura’s story inspire you? Are you a CF parent or caregiver walking a similar road? Share your story in the comments or tag us on social media to keep the conversation going. 🎙️ Subscribe & Review: Every review helps more families find this supportive community. 🔗 Follow us on Instagram: @childlifeoncall 📩 Contact the Show: lyndsey@childlifeoncall.com 📱 Get the App: Download SupportSpot to access child life resources anytime 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 are 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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    37 min
  • A Nurse Practitioner’s Story of Grief, Strength & Advocacy [REPOST] (251)- Ashley's Story

    A Nurse Practitioner’s Story of Grief, Strength & Advocacy [REPOST] (251)- Ashley's Story
    Apr 23 2025
    📢 This is a special repost of one of our most impactful and heartfelt episodes. Whether you’re hearing Ashley O’Neill’s story for the first time or revisiting it, her journey continues to resonate deeply with NICU families, pediatric providers, and anyone who has faced unimaginable loss and found strength in the aftermath. What happens when your personal and professional worlds collide in the NICU? For family nurse practitioner Ashley O’Neill, the journey into motherhood brought profound loss, relentless medical advocacy, and ultimately, a passion for helping others. Ashley’s story begins with the loss of her first son, followed by the premature birth of her second son Kolin at 25 weeks. What came next was 183 days in the NICU, the unexpected death of her husband, and the courage to rebuild a life—and community—from the ground up. In this heartfelt episode, we dive into: ✅ The trauma and triumph of parenting a 25-weeker through a 6-month NICU stay ✅ Navigating grief and motherhood after the loss of a child and spouse ✅ How Ashley’s medical background helped—and hurt—her NICU experience ✅ The frustrating reality of fighting for services, equipment, and insurance post-discharge ✅ How her Instagram and podcast connect NICU parents to life-changing resources ✅ The upcoming launch of her children’s book, It’s a NICU World Whether you’re a NICU parent, pediatric provider, or someone looking for hope in hard places, Ashley’s story will leave you inspired, seen, and supported. Timestamps & Key Topics ⏱️ [00:00] – Meet Ashley O’Neill Nurse practitioner, NICU mom, widow, and passionate advocate ⏱️ [01:00] – A Life-Changing Journey Begins Ashley’s first son, Vincent was born at 21 weeks and passed away shortly after birth Kolin’s birth at 25 weeks led to a 183-day NICU stay ⏱️ [04:00] – Between Medicine and Motherhood Navigating the NICU as a medical professional and a grieving mom ⏱️ [06:00] – Finding Strength in the Smallest Movements Kolin’s first days, brain bleeds, and the moment Ashley finally held him ⏱️ [10:00] – Advocacy in Action From NICU notebooks to signs above the incubator—Ashley’s daily commitment to giving Kolin a voice ⏱️ [14:00] – NICU Life, Community & Ronald McDonald House How support spaces and connections with other parents changed everything ⏱️ [18:00] – Creating Community Through Instagram and Podcasting How Ashley built a space for NICU parents navigating trauma, insurance, and life post-discharge ⏱️ [22:00] – Kolin’s Milestones & Medical Miracles G-tube, hydrocephalus, nonverbal communication—and now, reading, spelling, walking, and thriving ⏱️ [27:00] – No Limits: The Mindset That Changes Outcomes Why one provider said Kolin would never walk—and why Ashley refused to believe it ⏱️ [30:00] – Tips for Parents Leaving the NICU The reality of life post-discharge: equipment battles, Medicaid struggles, and why persistence is key ⏱️ [35:00] – Real Talk on Insurance & Resources How one visit to social services almost left her without home nursing Why you should never take the first “no” as your final answer ⏱️ [38:00] – The Inspiration Behind Ashley’s Children’s Book It’s a NICU World launches soon—with more books to follow Resources & Links 📘 Ashley’s Website & Resources: www.itsanicuworld.com 📲 Follow Ashley on Instagram: @itsanicuworld 🎙️ Podcast – Ask the NICU Mama: Available on all major platforms 💛 Follow Ashley’s Personal Story: @onthejourneytohealing Share Your Thoughts! Did this episode resonate with you? Know a NICU parent who needs to hear this? We’d love to hear your story—tag us on Instagram or leave a review on your favorite podcast app. 🎧 Subscribe & Review: Your support helps more families find strength and support through stories like Ashley’s. 🔗 Follow us on Instagram: @childlifeoncall 📩 Contact us at lyndsey@childlifeoncall.com 🎙️ Listen to more episodes: Child Life On Call Podcast 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 are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you ...
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    43 min
  • A Rare Diagnosis Journey: Collagenous Gastritis and IGG deficiency (250)- Alexis' Story

    A Rare Diagnosis Journey: Collagenous Gastritis and IGG deficiency (250)- Alexis' Story
    Apr 16 2025
    What if every milestone your child was supposed to reach came with countless curve balls? For Alexis Kaplan, motherhood quickly turned into a journey of advocacy, strength, and unwavering love as she navigated her daughter Gabby’s complex and rare health conditions. In this moving episode, Alexis shares: ✅ The moment her newborn was rushed to the NICU with a collapsed lung ✅ How her daughter’s recurring infections led to a diagnosis of immunodeficiency and collagenous gastritis ✅ The emotional toll—and strength—of being the medical historian and advocate for a medically complex child ✅ How weekly infusions, therapy, and figure skating are helping her daughter thrive ✅ Her advice for parents facing rare, chronic, or undiagnosed conditions This is a must-listen for anyone caring for a child with complex medical needs, healthcare providers who want to better understand the family perspective, and parents looking for inspiration and connection. Timestamps & Key Topics ⏱️ [00:00] – Meet Alexis Kaplan Mother of two, former PR pro, and fierce advocate for her daughter Gabby ⏱️ [03:00] – From a Healthy Start to a Medical Emergency Gabby is born with a spontaneous pneumothorax and was immediately taken to the NICU ⏱️ [08:00] – Life After NICU The strange silence in the hospital room and the emotional weight of an unexpected start ⏱️ [10:00] – Feeding Struggles and Early Signs Something Was Wrong Eczema, weight loss, food intolerance—and a mother’s instinct in full force ⏱️ [14:00] – The Fevers Begin Raging fevers, unrelenting illness, and a trip to the ER that revealed double pneumonia and RSV ⏱️ [19:00] – ENT Visits, Hearing Loss, and the Power of Child Life From audiology tests to the first Barbie from a Child Life Specialist—how support changed their hospital experience ⏱️ [22:00] – Asthma, Immunology & The First “Red Flag” Gabby’s pulmonologist recommends deeper testing, leading to a pivotal moment in her diagnosis journey ⏱️ [24:00] – Periodic Fever Syndrome & Tonsillectomy A working diagnosis leads to aggressive treatment—but symptoms persist ⏱️ [26:00] – Gastroenterology, Scopes & the Search for Answers A rare diagnosis: collagenous gastritis—so rare, the doctor had never seen it before ⏱️ [29:00] – The Diagnosis That Changed Everything Immunoglobulin deficiency is confirmed, leading to weekly subcutaneous infusions at home ⏱️ [31:00] – A Grey’s Anatomy Ritual & Finding Control Gabby takes charge of her infusions, watches Grey’s Anatomy, and finds a routine in the chaos ⏱️ [32:00] – Advocating for the Right Medication Alexis does her own research and fights for biologic treatment to manage Gabby’s symptoms ⏱️ [34:00] – Reflecting on Strength, Resilience & Motherhood The mental toll of advocating, comforting, and never giving up—and watching her daughter skate through it all ⏱️ [36:00] – TikTok Tips & Empowerment in the Hospital Line Gabby empowers other kids at the clinic with simple strategies to get through shots and IVs ⏱️ [37:00] – Final Reflections: Curveballs, Advocacy & Support How Facebook groups, therapy, and the power of asking questions help Alexis keep going Resources & Links 📌 Follow Gabby’s Skating Journey: @gkapskates on Instagram 📌 Follow Alexis' New Blog: @keep_throwing_curveballs 📲 Learn About the SupportSpot App: SupportSpot on the App Store Share Your Thoughts! Was this episode meaningful to you? Have your own rare disease parenting story or insights? We’d love to hear from you! Tag us on Instagram or leave a comment wherever you listen. 🎙️ Subscribe & Review: Help more families find support by subscribing and leaving a review on your favorite podcast app. 🔗 Follow us on Instagram: @childlifeoncall 📩 Contact: Connect with host Katie Taylor and the team behind SupportSpot. 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 are 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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    38 min
  • How to Talk With Children About Child Abuse [REPOST] (249)- Jane's Story

    How to Talk With Children About Child Abuse [REPOST] (249)- Jane's Story
    Apr 9 2025
    Knowing how to talk to kids about child abuse can feel overwhelming—but it doesn’t have to be. In this impactful episode of Child Life On Call, host Katie Taylor interviews child abuse prevention advocate Jane Donovan—who also happens to be her mom. Jane shares her personal journey, sparked by a tragic event, that led to a decades-long mission to protect children and educate communities. From creating a long-running puppet program for abuse prevention to empowering kids with body safety tools, this conversation is full of actionable advice for parents, caregivers, educators, and child life specialists. This is a special repost of one of our most important and requested episodes. Whether you’re hearing it for the first time or revisiting it, this conversation remains just as powerful and relevant today. In this episode, you'll learn: How to talk to kids about child abuse in age-appropriate, non-scary ways The importance of ongoing conversations about personal safety How tools like puppets, music, and hula hoops teach children about personal boundaries What parents should know about mandated reporting and how to act on their instincts How to evaluate youth-serving organizations for child safety protocols Why Children’s Advocacy Centers are essential for abuse investigation and healing Whether you're a parent, educator, or healthcare provider, this episode provides the tools and confidence you need to start meaningful conversations that protect kids and empower them. Timestamps & Key Topics ⏱️ [00:00] – Introduction: Meet Jane Donovan Katie introduces her guest (and mom), a lifelong child advocate Learn how the Child Life On Call app empowers families ⏱️ [03:00] – A Personal Story That Inspired a Mission How a child’s abduction changed Jane’s life Why she dedicated her career to child abuse prevention ⏱️ [06:00] – What Are Children’s Advocacy Centers? A child-friendly space for reporting, healing, and justice How they support kids through forensic interviews and therapy ⏱️ [09:00] – Making Conversations About Abuse Less Scary Why it’s not “the talk”—it’s ongoing, age-appropriate education Teaching safety in everyday moments without fear ⏱️ [11:00] – Teaching Kids About Boundaries with Puppets Introducing the “Kids Count Players” puppet show for elementary students Using storytelling and music to make serious topics approachable ⏱️ [15:00] – Personal Space for Children: Hula Hoops & “Uh-oh” Feelings How to use visual tools to teach kids about body autonomy and boundaries The difference between “good touch” and “confusing touch” ⏱️ [22:00] – Real Impact in Schools How the puppet show helped children disclose abuse Why teachers and counselors praise the program ⏱️ [23:00] – The Adult’s Role in Protecting Children Tips for keeping kids safe at camp, church, and extracurriculars How to ask youth-serving organizations about their safety policies ⏱️ [25:00] – Understanding Mandated Reporting Why professionals and caregivers must report suspected abuse How to file a report, even if you're unsure ⏱️ [29:00] – Practical Safety Tips for Parents Teach proper names for body parts Encourage privacy and reinforce their right to say “no” to unwanted contact ⏱️ [31:00] – Easy Tools & Takeaways How to start the conversation—and keep it going Resources & Links 📌 Learn about Children’s Advocacy Centers: www.cactexas.org 📺 Watch the Kids Count Players on YouTube 🎧 More podcast episodes: childlifepodcast.com Subscribe & Connect 👍 Was this episode helpful? Tag us on social media and share your thoughts. 🎙️ Subscribe & Review: Help others find this essential information by rating and reviewing the podcast. 📩 Contact us: Lyndsey@childlifeoncall.com 📲 Follow on Instagram 🎧 Listen now and start protecting kids through education and empowerment. 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 are 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 ...
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    34 min
  • MERRF Syndrome and Motherhood: Raising and Remembering Dahlia - Jessica’s Story (248)

    MERRF Syndrome and Motherhood: Raising and Remembering Dahlia - Jessica’s Story (248)
    Apr 2 2025
    "We followed Dahlia’s lead—and Dahlia was not going to let this stop her.” — Jessica Fein What happens when your child’s diagnosis is so rare that no one—including your doctors—knows how to help? For Jessica Fein, navigating life with her daughter Dahlia’s MERRF Syndrome meant redefining motherhood, finding joy in unexpected places, and transforming grief into connection and advocacy. In this honest and deeply moving episode, we explore: ✅ What it’s like to go on a diagnostic odyssey, and finally get answers that bring more questions ✅ The complexity of parenting a child with medical needs, including the realities of home care and hospital stays ✅ How grief exists even while your child is alive—and what ambiguous grief means for medical parents ✅ The power of storytelling, finding meaning through writing, and connecting with community through shared experience Whether you’re a parent, provider, or someone looking to better understand the emotional layers of complex care and rare disease, this episode will resonate with you. Timestamps & Key Topics ⏱️ [00:00] – Episode Intro Meet Jessica Fein and hear the quote that shaped this conversation ⏱️ [01:00] – Jessica’s Story Begins Navigating the early years of parenting without answers ⏱️ [03:00] – Diagnosis & the Unknown The journey to a MERRF Syndrome diagnosis and what came next ⏱️ [09:00] – Life With a Rare Disease Hospital stays, trachs, and becoming the expert in your child’s care ⏱️ [13:00] – Following Dahlia’s Lead Letting joy and silliness guide the way ⏱️ [17:00] – Who Dahlia Was A peek into Dahlia’s personality and how she impacted everyone she met ⏱️ [20:00] – Writing As Healing How Jessica turned to writing as an act of reflection, advocacy, and self-care ⏱️ [24:00] – What Helps in the Hospital Tangible ways friends and providers can support caregivers ⏱️ [30:00] – Grief, Then and Now Understanding ambiguous grief—and the evolution of loss after death ⏱️ [33:00] – How to Connect With Jessica Where to find her book, podcast, and writing Resources & Links from today's episode: 📕 Read Breathtaking by Jessica Fein: [Available on Amazon and wherever books are sold] 🌐 Visit Jessica’s website: www.jessicafeinstories.com 🎧 Listen to her podcast: I Don’t Know How You Do It 📷 Follow Jessica Fein on Instagram, Facebook and LinkedIn Share Your Thoughts Did this episode resonate with you? Do you have a story of parenting through rare disease or complex medical care? We’d love to hear from you—tag us or leave a comment! If you found this episode meaningful, please subscribe and leave a review—it helps more families discover these conversations. ❤️ SupportSpot is Here for You SupportSpot gives you instant access to expert child life tips, emotional support, and medical journey resources. Try it FREE for 7 days! Subscribers can book a complimentary visit with a Child Life Specialist through Child Life On Call. Start now at childlifeoncall.com/supportspot 🎙️ Meet the Host Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform connecting families and care teams with expert child life services. A certified child life specialist for over 13 years, Katie has worked across pediatric healthcare settings, presented nationally, and is the author of a children’s book. She hosts the Child Life On Call Podcast to amplify parent voices and emphasize the value of child life services. 📱 Instagram.com/childlifeoncall 📘 Facebook.com/childlifeoncall 🔗 linkedin.com/in/kfdonovan 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 are 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. Keywords: MERRF Syndrome, Rare Disease, Medical Parenting, Grief, Child Life
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    35 min
  • A Cerebral Palsy Diagnosis: Traumatic Birth, Micropreemie Twins & the Power of Hope {REPOST}- Savannah’s Story (247)

    A Cerebral Palsy Diagnosis: Traumatic Birth, Micropreemie Twins & the Power of Hope {REPOST}- Savannah’s Story (247)
    Mar 26 2025
    “It wasn't any kind of strength within myself that helped me get through the NICU. It was the strength they had—they gave it to me.”- Savannah O'Malley 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. What happens when your birth plan is shattered in an instant? For Savannah, the unexpected arrival of her micropreemie twins at just 24 weeks turned her world upside down. One of her sons faced significant medical challenges, including brain bleeds and a cerebral palsy diagnosis, while the other grew without complications. Through it all, Savannah found healing in advocacy, art, and the power of sharing her story. In this moving episode, we explore: ✅ The emotional and medical complexities of delivering micro-preemie twins ✅ How a cerebral palsy diagnosis reshaped their family’s journey ✅ The silent struggle of maternal mental health after a traumatic birth ✅ Why peer support and storytelling matter in healing and advocacy ✅ How Savannah’s Cards of Hope project is making a difference for other NICU moms Savannah’s story is a testament to resilience, love, and the incredible strength of mothers navigating complex medical journeys. Whether you're a NICU parent, a healthcare professional, or someone seeking inspiration, this episode will leave you feeling empowered. Timestamps & Key Topics ⏱️ [00:00] – Episode Intro Welcome to today’s episode featuring Savannah O’Malley The importance of sharing NICU and maternal mental health stories ⏱️ [01:00] – Meet Savannah Mom to three, including twin micro-preemies Advocate for maternal mental health and children with disabilities ⏱️ [03:00] – The Unexpected Arrival: 24-Week Twins How Savannah’s pregnancy took a sudden turn Navigating a traumatic birth and immediate NICU admission ⏱️ [09:00] – The Medical Rollercoaster Begins Brain bleeds, heart complications, and emergency surgeries Balancing hope with overwhelming medical challenges ⏱️ [13:00] – A Life-Changing Diagnosis: Cerebral Palsy & Hydrocephalus How Lachlan’s brain injury shaped their early intervention journey The emotions of receiving a CP diagnosis and shifting expectations ⏱️ [24:00] – Maternal Mental Health: The Hidden Battle Why Savannah struggled with PTSD and anxiety The moment a medical professional finally validated her trauma Why maternal mental health screenings should extend beyond the NICU ⏱️ [30:00] – The Power of Peer Support Finding community in other NICU and disability moms How social media became a lifeline for connection and hope ⏱️ [38:00] – Turning Pain into Purpose: Cards of Hope How Savannah combined her love for art with her advocacy Sending free, uplifting artwork to mothers of traumatic births How small acts of kindness can have a profound impact ⏱️ [44:00] – Lessons from Motherhood & Advocacy Why Savannah wouldn’t change a thing about her son’s journey The importance of celebrating progress, not just milestones How caregivers can find strength in their child's resilience ⏱️ [50:00] – Where to Find Savannah & How to Support Cards of Hope How you can receive or gift a Card of Hope Why sharing your story can be the start of healing Resources & Links 📌 Sign Up for a Card of Hope: SavvyJane.com 📥 Follow Savannah’s Journey on Instagram: @SavvyJaneOMalley 🎨 Support the Cards of Hope Project: Purchase art prints to fund outreach 🎧 Listen to more episodes: Child Life On Call Share Your Thoughts! Did Savannah’s story resonate with you? Have your own experience with micropreemies or maternal mental health? We’d love to hear from you! Leave a comment below or tag us on social media. 🎙️ Subscribe & Review: If you enjoyed this episode, be sure to subscribe and leave a review—it helps more families find these powerful conversations! 🔗 Follow us on Instagram: @childlifeoncall 📩 Contact us: hello@childlifeoncall.com 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 are experiencing a medical emergency, call 911 or seek immediate ...
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    46 min
  • Pyroxd1 and the Path Forward: A Rare Disease, a Life-Saving Lesson & a Mission to Help Others- Maria + Matt's Story (246)

    Pyroxd1 and the Path Forward: A Rare Disease, a Life-Saving Lesson & a Mission to Help Others- Maria + Matt's Story (246)
    Mar 19 2025
    "What we realized was that rare isn’t as rare as we think—there are so many of us out here searching for answers, fighting for our kids, and trying to make a difference."- Maria Granados 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. What if a simple miscommunication in the hospital could have cost your child their life? For Maria and Matt Granados, parents of a daughter with Pyroxd1, that terrifying moment led to a groundbreaking realization—and a mission to help other families facing rare diseases. In this powerful episode, we dive into: ✅ The challenges of diagnosing and living with Pyroxd1, a rare neuromuscular condition ✅ A near-fatal hospital mistake that could have changed everything ✅ How they turned their personal struggles into Take Part Foundation, a nonprofit funding rare disease research ✅ The power of storytelling, advocacy, and community for families navigating the unknown Maria and Matt’s story is one of resilience, innovation, and advocacy, proving that "rare is more common than you think." Whether you’re a rare disease parent, medical professional, or someone looking for inspiration, this episode is a must-listen. Timestamps & Key Topics ⏱️ [00:00] – Episode Intro Welcome to today’s episode featuring Maria & Matt Granados Why raising awareness for Pyroxd1 is so important ⏱️ [01:00] – Meet Maria & Matt Their family’s journey: married 9 years, three kids, and an entrepreneurial spirit How flexibility in work became essential for parenting a child with complex medical needs ⏱️ [03:00] – The Start of Their Rare Disease Journey Pregnancy and early signs something was different with Natalie The challenges of getting doctors to take concerns seriously Being told “don’t worry” for a year—while their instincts said otherwise ⏱️ [09:00] – The Thanksgiving Hospital Crisis That Changed Everything Natalie’s sudden health decline and emergency hospitalization The shocking realization that hospitals don’t share medical records effectively How a simple website they built saved Natalie’s life by preventing a life-threatening medication error ⏱️ [13:00] – Turning Their Experience Into a Mission How their frustration with the system led them to found Take Part Foundation Why families need access to their child’s full medical history The power of self-advocacy in rare disease care ⏱️ [24:00] – What Is Pyroxd1? Understanding This Rare Condition A breakdown of what Pyroxd1 is and how it affects the body The difficulty of finding a diagnosis and why many families go undiagnosed ⏱️ [30:00] – The Reality of Rare Disease Research & “Death Valley” Funding The shocking truth: 95% of rare diseases have no FDA-approved treatment Why promising research often stalls due to lack of funding How Take Part Foundation provides grants to researchers in need ⏱️ [38:00] – How Take Part Helps Families Get Genetic Testing Many families can’t afford genetic testing—so Take Part is filling the gap The impact of a diagnosis on getting insurance coverage for therapies and equipment ⏱️ [44:00] – Strengthening Their Marriage Through the Rare Disease Journey The emotional toll of raising a medically complex child The mindset shift that saved their marriage: “If Natalie’s not offended, I don’t need to be offended.” The importance of seeing doctors as humans, too ⏱️ [50:00] – Let Your Fight Shine: A Message for Other Rare Parents Maria’s beautiful perspective on embracing the fight instead of hiding it Why advocacy is the most powerful tool rare disease parents have ⏱️ [52:00] – Where to Find Maria & Matt + How to Support Take Part Foundation How to get involved, donate, or apply for support Why storytelling is a crucial part of the rare disease journey Final words of encouragement for other families Resources & Links 📌 Learn More About Pyroxd1 & Take Part Foundation: www.take-part.org📥 Apply for Genetic Testing Support: Take Part Foundation Resources (Coming Soon!) 📲 Follow Take Part on Instagram: @TakePartFoundation 🎧 Listen to more episodes: Child Life On Call Share Your Thoughts! Did you find this week's episode helpful? We’d love to hear from you! Leave a comment below or tag us on social media. 🎙️ Subscribe & Review: If you enjoyed this episode, be sure to subscribe and leave a review—it helps more families find these helpful conversations! 🔗 Follow us on Instagram:@childlifeoncall 📩 Contact us: Lyndsey Fedorko ❤️ Ready to make hospital visits and medical journeys easier for your family? With SupportSpot, you get instant access to expert child life tips, emotional support, and resources right at your fingertips. For the next 7 ...
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    54 min