Learning to swallow pills can be a major milestone—and a big challenge—for many kids. In this episode, certified child life specialist Adina Levitan joins host Katie Taylor to break down the myths, fears, and best practices behind teaching children how to confidently swallow pills.

From her clinical expertise to creative solutions like affirmations, games, and candy "pill" practice, Adina walks us through her unique approach to supporting kids and parents through this skill-building process. Whether you're a caregiver, clinician, or a parent trying to help your child at home, this episode is packed with insight, encouragement, and practical steps you can start today.

In this episode, you’ll learn:

✅ Why pill swallowing is a learned skill that takes time and practice

✅ Tools and strategies to make learning fun and pressure-free

✅ How to create a pill-swallowing kit and step-by-step plan

✅ Creative tricks like affirmations, bingo, and candy practice

✅ Why early, low-stress practice is key—and how to know when to ask for more help

 

Timestamps & Key Topics

[00:00] – Meet Adina, CCLS Child life journey and hospital experience in surgery and oncology

[06:00] – The First Pill Swallowing Consult How a simple Facebook post launched a new resource

[08:00] – Why It’s Not a One-and-Done Skill Building confidence over weeks, not minutes

[09:00] – The Candy Ladder Using sprinkles, Nerds, and Tic Tacs as practice tools

[11:00] – The Birth of a Resource How Adina’s workbook was created for families and clinicians

[12:00] – Unrealistic Hospital Expectations Why pill swallowing consults need more time and less pressure

[14:00] – Every Kid Is Different There’s no one-size-fits-all technique—just trial, error, and support

[15:00] – Ideal Ages and Proactive Practice Why second grade and up is a great place to start

[16:00] – What’s in the Pill Swallowing Workbook? Affirmations, tools, weekly trackers, tips & tricks, and more

[20:00] – Setting Up for Success When to practice, how long, and how to keep stress low

[22:00] – Suggested 6–7 Week Practice Plan Why taking your time is key to success

[23:00] – Incentives & Bingo Making pill practice feel like play

[24:00] – How to Get the Resource Details on accessing the workbook for families

Resources & Links

📌Illuminate Child Life Website

 

📥 Pill Swallowing Workbook 

 

📲 Download the SupportSpot app to get support for procedures and resources today!

 

 🎧 More episodes: https://www.childlifeoncall.com/podcasts

 

Share Your Thoughts

Has your child struggled to swallow pills? What strategies worked for you? Share your story or tag us with your own tips on Instagram.

🎙️ Subscribe & Review: Help more families discover these tools by leaving a review.

📩 Contact us: [email protected]

 

🎧 Listen Now and Learn How to Make Pill Swallowing Easier for Kids

 

 

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.

 

“You make the best decision for yourself and your family—and you stick with it.”- Kim Pena

What happens when you’re handed unexpected news at your child’s birth—and there’s no clear roadmap ahead? In this reposted episode, educator and mom Kim Pena shares her powerful journey as the parent of a child born with Microtia Atresia, a rare congenital condition affecting the ear. Kim was one of Katie’s very first guests on the Child Life On Call podcast, and her story is still a listener favorite to this day. In this repost, Katie kicks off the episode by giving us a quick update about Kim’s son. 

From discovering her son’s diagnosis at birth to making emotional, high-stakes decisions about surgery and hearing aids, Kim walks us through her family’s deeply personal experience with compassion, clarity, and humor.

In this episode, you'll learn:

✅ What Microtia Atresia is and how it affects children

✅ How Kim and her husband navigated hearing loss, reconstructive surgery, and insurance battles

✅ Why early intervention with hearing aids changed everything

✅ What recovery and long-term care looked like for their son

✅ How to find trusted resources and support if your child is diagnosed

 

Kim’s story offers encouragement, practical wisdom, and a reminder that joy often shines through the hardest moments.

Timestamps & Key Topics

⏱️ [00:00] – Introduction: Meet Kim and Thomas Kim’s background as an educator, and how her son’s birth revealed an unexpected diagnosis

⏱️ [02:00] – What Is Microtia Atresia? Definition and how it affects the outer and middle ear Kim learns about the condition immediately after birth

⏱️ [04:00] – Family History and Diagnosis Challenges The connection to Kim’s brother-in-law Why this condition wasn’t caught on ultrasound

⏱️ [07:00] – Building a Support System How Kim’s relationship with her father-in-law became essential Finding emotional and logistical support from someone who’s been there

⏱️ [09:00] – First Surgeries and Hearing Tests Understanding Thomas’s hearing loss The process of getting tested, hearing aids, and early therapy

⏱️ [11:00] – Choosing the Right Surgery Exploring different surgical options, including rib graft and Medpor Why Kim’s family chose a single-surgery approach

⏱️ [13:00] – Surgery Day and Recovery A 13-hour surgery and the emotional toll Why recovery in California brought unexpected connections

⏱️ [16:00] – Post-Surgery Life & Daily Care What healing looked like in the months after Kim’s advice on establishing trust, prepping a toddler, and using distraction

⏱️ [20:00] – The Bittersweet Nature of Change Letting go of “his little ear” Gratitude for what the journey has taught their family

⏱️ [22:00] – Research, Advocacy & Making Confident Choices The role of online communities and navigating defensiveness Why Kim recommends aiding early—and being unapologetic about your choices

⏱️ [27:00] – A Life-Changing Hearing Aid Moment The first time Thomas could hear clearly—how it changed their world Why Kim wishes she had recorded that moment

⏱️ [29:00] – Final Reflection: Raising a “Joy Boy” Despite everything, Thomas’s joy and resilience shine through Why Kim’s journey is one of perspective, peace, and purpose

 

Resources & Links

📌 Learn More About Microtia Atresia:

• microtia.net – Up-to-date education & support

• earcommunity.org – Parent-led advocacy and insurance help

• microtiasurgery.com – Thomas’s surgeon with videos and guides

• pediatricent.com – Additional surgical resource (Dr. Bonilla, San Antonio)

📲 Connect with Kim:

• Instagram 

Share Your Thoughts!

Know someone raising a child with Microtia Atresia? Share this episode to let them know they’re not alone.

💬 Leave a comment or tag us on Instagram: @childlifeoncall

🎙️ Subscribe & Review: Help more families find these stories by leaving a review on your favorite podcast platform.

📩 Contact us: [email protected] 

 

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.

 

What if blending real food could transform your child’s tube feeding experience—and your entire family’s daily routine? In this inspiring episode, registered dietitian and new mom Hilarie shares how her career in pediatric nutrition led her to create Blended Tube Feeding, a platform and supportive community designed to help families explore real food options for children with feeding tubes.

Hilarie and Katie have an insightful conversation about doing what works best for your family and how it is not an all-or-nothing approach when it comes to tube feeding. From clinical frustrations to practical breakthroughs, Hilarie’s story is packed with insight, empathy, and encouragement for families navigating complex feeding needs.

 

In this episode, you’ll learn:

✅ What blenderized tube feeding is—and how it helps with digestion, connection, and flexibility

✅ How Hilarie’s work in a neurodevelopment clinic inspired her mission

✅ Common fears and how to overcome them when shifting from formula to real food

✅ How to start slowly and safely with blended meals (even using store-bought purees!)

✅ Where to find affordable support, recipes, and a welcoming online community

 

Whether you’re new to tube feeding or ready to explore new options, this episode offers knowledge, support, and a hopeful outlook for the journey ahead.

Timestamps & Key Topics

⏱️ [00:00] – Meet Hilarie: Registered Dietitian, New Mom, Real Food Advocate How her love of cooking, gardening, and clinical work intersected in her passion project Why food is central to her family and her mission

⏱️ [04:00] – The “Aha” Moment Behind Blended Tube Feeding Real families, real frustrations, and real improvements How small changes led to big results in digestion and quality of life

⏱️ [06:00] – Formula Isn’t the Enemy: Finding What Works Why Hilarie supports a nonjudgmental approach Blended food can be part-time, full-time, or not at all—it’s about what’s right for your child

⏱️ [08:00] – What Getting Started Looks Like Step-by-step tips: from single-ingredient purees to homemade blends Why slow is better—and how to build confidence without overhauling everything

⏱️ [11:00] – Real Fears, Real Parents Why  many parents worry about “rocking the boat” What success looks like when routines become manageable and joyful

⏱️ [13:00] – Why Aren’t Dietitians Taught This? The history behind formula becoming standard How schools and hospitals are starting to reintroduce food-based tube feeding

⏱️ [14:00] – Hilarie’s Virtual Support Programs Online courses, a private community, and flexible coaching Affordable access to evidence-informed resources—starting at just $37/month

⏱️ [17:00] – Motherhood Perspective Shift How becoming a parent deepened her empathy for families Why accessibility, flexibility, and simplicity matter more than ever

⏱️ [19:00] – A Favorite Success Story One family’s journey from 2-hour feeds and fear of leaving the house—to freedom, flexibility, and Panera bread - How small wins can transform daily life

⏱️ [21:00] – Where to Start: Free Resources & Community Instagram, blog articles, recipes, and real-life advice Why you don’t have to figure it all out alone

Resources & Links

• Get Free Resources: Starter tips, recipes, and blog articles: www.blendedtubefeeding.com

• Research on Blenderized Tube Feeding 

• Links to Commercial Real Food Products

• 📲 Follow Hilarie on Instagram: @blendedtubefeeding
•  💬 Join the Community Group: Month-to-month access to guides, support, and connection

Share Your Thoughts!

Are you considering blenderized tube feeding for your child? Have you tried it already? We'd love to hear your story! Comment below or tag us on social.

🎙️ Subscribe & Review: Help more families discover these powerful conversations. 🔗 Follow us on Instagram: @childlifeoncall 📩 Contact us: [email protected]

 

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.

 

📢 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.

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: [email protected] 📱 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.

📢 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 [email protected] 🎙️ 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 acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

 

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.

 

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: [email protected] 📲 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 provided.

 

"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

“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: [email protected]

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.