loader from loading.io

A Mother and a Physician: Navigating Her Daughter’s NMOSD Diagnosis – Maggie’s Story (244)

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

Release Date: 03/05/2025

The NICU Dad Experience: A father’s view from the NICU [REPOST] (257)-Alex’s Story show art The NICU Dad Experience: A father’s view from the NICU [REPOST] (257)-Alex’s Story

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

What happens when your world changes with a single phone call? In this powerful reposted episode, NICU dad and advocate Alex Zavala shares his emotional journey of fatherhood after his daughter was born at just 27 weeks. From the emergency C-section and NICU stay to the emotional toll of the "NICU dad shuffle," Alex opens up about the lesser-heard experience of dads navigating medical trauma, guilt, and resilience. As the host of the NICU Dad Podcast, Alex continues to amplify the voices of fathers facing similar experiences. This conversation is an essential listen for NICU families and...

info_outline
Helping Kids Swallow Pills:Tips and tricks for Parents from a Child Life Specialist (256)-Adina's Story show art Helping Kids Swallow Pills:Tips and tricks for Parents from a Child Life Specialist (256)-Adina's Story

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

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...

info_outline
A Microtia Atresia Diagnosis: Hearing Aids, Surgery and a Journey of Hope  [REPOST] - Kim's Story(255) show art A Microtia Atresia Diagnosis: Hearing Aids, Surgery and a Journey of Hope [REPOST] - Kim's Story(255)

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

  “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...

info_outline
Blended Tube Feeding for G-tube fed Kids & Adults: How a dietician empowers families through food - Hilarie’s Story (254) show art Blended Tube Feeding for G-tube fed Kids & Adults: How a dietician empowers families through food - Hilarie’s Story (254)

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

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 , 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...

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

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

📢 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:...

info_outline
Two Sisters with Cystic Fibrosis - Laura's Story (252) show art Two Sisters with Cystic Fibrosis - Laura's Story (252)

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

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...

info_outline
A Nurse Practitioner’s Story of Grief, Strength & Advocacy [REPOST] (251)- Ashley's Story show art A Nurse Practitioner’s Story of Grief, Strength & Advocacy [REPOST] (251)- Ashley's Story

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

📢 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...

info_outline
A Rare Diagnosis Journey: Collagenous Gastritis and IGG deficiency (250)- Alexis' Story show art A Rare Diagnosis Journey: Collagenous Gastritis and IGG deficiency (250)- Alexis' Story

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

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...

info_outline
How to Talk With Children About Child Abuse [REPOST] (249)- Jane's Story show art How to Talk With Children About Child Abuse [REPOST] (249)- Jane's Story

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

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...

info_outline
MERRF Syndrome and Motherhood: Raising and Remembering Dahlia - Jessica’s Story (248) show art MERRF Syndrome and Motherhood: Raising and Remembering Dahlia - Jessica’s Story (248)

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

"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...

info_outline
 
More Episodes

"I thought my job was to save my daughter, but I realized my job was to show her how to live with strength and resilience." – Dr. Maggie Kang

 

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.

In this powerful episode, Dr. Maggie Kang shares her deeply personal journey as a physician and a mother navigating her daughter’s rare disease diagnosis, Neuromyelitis Optica Spectrum Disorder (NMOSD). She discusses the emotional and medical challenges she faced, her transition into advocacy, and how she now supports families through life coaching.

In an insightful conversation, Katie and Maggie explore the complexities of grief, resilience, and advocacy. Maggie opens up about the difficult moments in her daughter’s diagnosis, how she learned to trust her instincts, and the importance of both self-care and community in the rare disease journey. Together, they discuss the emotional weight of parenting a child with a chronic illness and the ways families can empower themselves in the healthcare system. 

What You’ll Take Away from This Episode:

🏥 Navigating the Medical System: She shares how she advocated for faster testing, sought expert opinions, and utilized her connections to expedite care.

 

 


🤝 The Importance of Community: Connecting with other rare disease parents provided knowledge, support, and hope for the future.

 

 


💔 Processing Grief and Change: Katie and Maggie discuss the emotional toll of rare disease parenting and how healing often begins after leaving the hospital.

 

 


📢 Advocacy Matters: Maggie's push for better understanding of NMOSD has helped bring awareness and improve care options for future patients.

 

 


💙 Self-Care for Caregivers: She emphasizes how caring for oneself is critical in sustaining long-term caregiving and preventing burnout.

 

 

 

Connect With Dr. Maggie Kang

Link to Dr. Maggie's Website

Dr.Maggie's TEDx Talk

Nell's Book

 

❤️ 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 days, try it FREE and discover how this app can reduce stress, ease your child’s anxiety, and help you feel more prepared every step of the way. Subscribers have the opportunity to sign up for a free visit with a Child Life Specialist at CLOC to help you get the support you need from SupportSpot. Try it for free by clicking this link. 

🎙️Meet the host: 

Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.

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:  NMOSD, Female Physician, Doctor Mom, Pediatrics, Child Life Specialist