228: Early Diagnosis, Advocacy and Equity: A daughter with Cystic Fibrosis- Nikki's Story
Release Date: 09/04/2024
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](https://assets.libsyn.com/item/35991140?height=50&width=50)
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...
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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...
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A Cerebral Palsy Diagnosis: Traumatic Birth, Micropreemie Twins & the Power of Hope {REPOST}- Savannah’s Story (247)
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
“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 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...
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Pyroxd1 and the Path Forward: A Rare Disease, a Life-Saving Lesson & a Mission to Help Others- Maria + Matt's Story (246)
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
"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 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...
info_outline![Navigating HIE: Hope for Families, and Life Beyond the NICU [REPOST]- Betsy's Story (245) show art](https://assets.libsyn.com/item/35575705?height=50&width=50)
Navigating HIE: Hope for Families, and Life Beyond the NICU [REPOST]- Betsy's Story (245)
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
"I remember sitting in the NICU thinking, ‘Am I going to lose my baby? Is this the best outcome for him? What will his life look like?’ And then I realized—I wasn’t alone in these thoughts. Other parents had been here before, and they found a way forward. That’s when I knew we needed a community like Hope for HIE." — Betsy Pilon, Founder Hope for HIE 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 What happens when your...
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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
"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 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...
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243: A Child Life Specialist’s Search for Answers: A Long COVID Diagnosis - Jessica’s Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
"If something doesn’t feel right, don’t ignore it. Keep asking questions. You know your child better than anyone."-Jessica Baird, CCLS 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 What do you do when doctors keep telling you nothing is wrong—but your child is in pain every single day? For Jessica, a child life specialist and mom, that answer was simple: keep pushing until someone listens. In this powerful conversation, Katie sits...
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242:A Daughter's PCHD19, Autism + Epilepsy Diagnosis: The motivation behind the connected parent-Julie's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
"I had to teach myself to advocate – no one should leave a hospital with more trauma than they came with."- Julie Walters 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 In this episode, Katie speaks with Julie Walters, a mom of two neurodivergent children, entrepreneur, and fierce advocate for inclusion and health equity.Julie shares her deeply personal journey navigating her daughter's epilepsy diagnosis, the challenges of parenting...
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241: How a Kidney Transplant started a mission to help Transplant Families-Cheryl + Kimmy's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
“Our goal wasn’t to build something huge overnight – it was to listen to families, fill the gaps, and take that first step.” – Cheryl Whitty 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 In this heartfelt episode, Katie sits down with mother-daughter duo, Cheryl Witty and Kimmy Witty to hear the inspiring story of how their family journeyed through chronic kidney disease and how a kidney transplant led to the creation of...
info_outline"We are the experts on our daughter and we deserve a say, and we deserve to be given the time to ask questions." – Nikki DeLeo
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 heartfelt episode, host and Certified Child Life Specialist Katie Taylor speaks with Nikki DeLeo, a mother of Taylor, her daughter who has Cystic Fibrosis (CF). Katie and Nikki discuss Nikki’s journey navigating her daughter Taylor's diagnosis from day one, the emotional rollercoaster of becoming a medical parent, her advocacy for Taylor's care, and the importance of equity in newborn screenings for CF. With Taylor's unique case, Nikki discusses the challenges and triumphs of managing a life-changing diagnosis, emphasizing the role of medical teams and community support in fostering resilience and hope.
Key Insights:
The Importance of Early Diagnosis: Nikki emphasizes how critical early diagnosis was for her daughter Taylor, who started life-saving medication within months of her birth.
Advocacy and Education: Nikki shares how she became an expert in her daughter’s care, highlighting the necessity of parents being active members of the care team.
Equity in Healthcare: Nikki passionately discusses the disparities in newborn screenings for children of color and the need for equity in medical care to prevent delayed diagnoses.
The Power of Community: Finding other parents online and connecting with the Cystic Fibrosis Foundation were vital for Nikki in navigating the challenges of CF.
"Finding other parents online who are going through the same thing has been a lifeline for me." – Nikki DeLeo
Resources & Tips:
Cystic Fibrosis Foundation: Visit the CF Foundation to find local chapters and resources for parents and caregivers.
Book Recommendation: Breath from Salt - An insightful book about the CF community and the advancements in CF care.
Follow Nikki's Journey: Check out Nikki’s Instagram page, @salt_for_sweet_t, for more on her family’s journey.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
- 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface.
- 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better.
- 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child.
- 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare
Learn more here.
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.