228: Early Diagnosis, Advocacy and Equity: A daughter with Cystic Fibrosis- Nikki's Story
Release Date: 09/04/2024
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...
info_outline
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
240: How to Stay Calm During Medical Procedures
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
In this episode of Child Life On Call, host Katie Taylor, a certified child life specialist, shares personal experiences and practical advice on maintaining calm during your child's medical procedures. Katie recounts a traumatic incident with her daughter, emphasizing the natural parental panic response and how to manage it. She offers three key strategies: getting informed about medical procedures, finding a supportive role during the process, and taking care of your own physical and emotional needs. Katie introduces the Support Spot app as a valuable resource, providing step-by-step guides...
info_outline
239: Finding Grants Brought Hope - Abby's Story: A son's near drowning accident
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
“Hope doesn’t take away the darkness, but it shines some light in it.”- Abby Zachritz 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 first episode of the year, Katie sits down with Abby Zachritz—better known as Advocacy Abby—who shares her journey from personal tragedy to becoming a beacon of hope for families in need. Abby recounts the near-drowning accident that changed her son Wyatt’s life and how her...
info_outline
238: Parents: How to Make the Most out of Rounds in the Hospital
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
Navigating Medical Rounds: Tips for Parents from a Child Life Specialist In this episode, Katie Taylor, a certified child life specialist, offers critical insights and tips for parents navigating medical rounds with their hospitalized children. She introduces Q Rounds, a new tool developed by Dr. Mike aimed at making rounds more predictable and accessible for families. Katie explains the purpose and structure of rounds, highlighting the importance of family-centered rounds. She provides strategies for effective communication with the healthcare team, including preparing...
info_outline
237: Holding Space for Hope : The Final Episode of 2024
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
"Hope isn't about avoiding the hard truths. It's about staying grounded in them and still believing that something good is possible."- Katie Taylor In this final episode of 2024, Katie dives deep into the meaning of hope, exploring its role in navigating challenges for parents, children and Child Life Specialists. Reflecting on personal experiences and heartfelt conversations with families, this episode unpacks how hope isn’t blind optimism but a source of strength that coexists with pain and uncertainty. With stories, reflections, and an invitation to carry hope into the new year,...
info_outline
236: The Mix of Joy & Grief through Medical Parenting (autism, lissencephaly and lennox gastaut syndrome) – Joanne's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
"Life is always in the mix of joy and grief, and those things coexist. But this is how I’m going to deal with it." - Joanne De Simone In this episode of the Child Life On Call Podcast, Joanne De Simone shares her journey as a parent raising two sons with disabilities. From navigating her eldest son Benjamin’s rare brain malformation, lissencephaly and complex medical needs to supporting her younger son Sebastian, who is on the autism spectrum. Joanne discusses the challenges, victories, and personal growth she’s experienced. As a mother and special education teacher, and now an...
info_outline
235: A Mother’s Journey of Love, Loss, and Resilience (crohn's and ulcerative colitis) - Kathy's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
“If anybody was to ask me what is one of my biggest strengths, I have to tell them it's resilience… You can throw almost anything at me and I can handle it. I mean, there isn't anything any bigger in this world than losing a child.”-Kathy In this heartfelt episode, Katie Taylor sits down with Kathy, a mother who shares her journey of raising and caring for her daughter Lauren through multiple medical challenges and eventual passing. Kathy’s story is both heart-wrenching and inspiring. Kathy reflects on the emotional, physical, and logistical challenges of managing long hospital...
info_outline
234: Expert Child Life Tips for Supporting Children Through an Upper GI Procedure
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
Today's episode is dedicated to the loving memory of Dr. Meredith Hitch, a cherished pediatric gastroenterologist at Ochsner Baton Rouge. “You want to make sure that you are ready to be able to prepare not only yourself but your kiddo.” - Emily Martinec, CCLS In this episode host Katie Taylor chats with Emily Martinec, another experienced Child Life Specialist. These two dive into the complexities of preparing children for an upper GI procedure. They provide valuable insights and practical tips for both parents and fellow specialists, sharing lessons learned from their...
info_outline
233: From NICU Nurse to NICU Mom: Premature Twins born at 33 weeks - Brittney’s Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
A huge thank you to our sponsor of today's podcast, 30% of children struggle with constipation and it can feel impossible trying to find a solution for your child. Especially if your child has food allergies or has a condition or illness, you want to feel good about the products you are selecting for your child. To me, finding a company whose products have the highest quality and natural ingredients is really important. Begin Health®’s flagship product, Growing Up Prebiotics, is a tasteless, textureless fine powder that easily mixes into water, juice, or smoothies. This...
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.