228: Early Diagnosis, Advocacy and Equity: A daughter with Cystic Fibrosis- Nikki's Story
Release Date: 09/04/2024
235: A Mother’s Journey of Love, Loss, and Resilience- Kathy's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
“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...
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234: Expert Child Life Tips for Supporting Children Through an Upper GI Procedure
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
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...
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233: From NICU Nurse to NICU Mom: Premature Twins born at 33 weeks - Brittney’s Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
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...
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232: Preparing and Supporting your child: A son with Breath Holding Spells-Alessandra's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
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 makes...
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231: Child Life Specialist Secrets: Flu Shot Prep Strategies Every Parent Should Know
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
Child Life Specialist Secrets: Flu Shot Prep Strategies Every Parent Should Know Thank you to the sponsor of today's podcast: In this episode of the Child Life On Call Podcast, hosts Katie Taylor and Emily Martinec, both certified child life specialists, discuss strategies for preparing, supporting, and responding to children during flu shots. The conversation extends to other medical experiences, offering developmentally appropriate ways to engage children. They emphasize collaboration with medical professionals, highlight coping techniques, and provide resources like the Support Spot app...
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230: Navigating Childhood Cancer: Supporting families through her own experience - Heather's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
230: Navigating Childhood Cancer: Supporting families through her own experience - Heather's Story "We’ve joined a club that nobody wants to be a part of, but the good part is we have the best members." 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...
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229: Trusting your parental Instincts when addressing your child's chronic pain- A son with Juvenile Arthritis- Kim’s Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"Trust your gut. If your parent radar comes up and says this is not right, keep pushing." – Kim In this episode, Katie Taylor speaks with Kim Miller, a mother whose journey navigating her son Grant’s diagnoses of juvenile arthritis reshaped her life. Kim shares how her relentless advocacy led her family through unimaginable challenges, including managing chronic pain and finding the right medical care. Her inspiring story unfolds from the hardships of watching her son struggle to walk, to his incredible transformation into an NFL player. The episode highlights the critical role of...
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228: Early Diagnosis, Advocacy and Equity: A daughter with Cystic Fibrosis- Nikki's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"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...
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227: Searching for a Diagnosis: A Rare Disease Mom and Advocate's Journey - ADCY5 Gay's Story
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"If you have a doubt about something with your child or a family member, it's just really important to keep pushing through and get to the answers." – Gay Grossman In this episode, host Katie Taylor speaks with Gay Grossman, a passionate patient advocate and mother, about her journey navigating the rare disease world. Gay shares her experience of seeking a diagnosis for her daughter, advocating for genetic testing, and supporting families through complex medical and educational challenges. Her story highlights the importance of persistence, building a support network, and staying organized....
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226. Moms on a Mission: Raising Pediatric Feeding Disorder Awareness with Jaclyn & Athena from Feeding Matters
Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist
"Combining my personal experiences as a mom with my professional role has given me a unique perspective on the challenges families face and the solutions they need." - Jaclyn Pederson In this insightful episode, host Katie Taylor speaks with Jaclyn Pederson, CEO of Feeding Matters and mother, and Athena Flicek, a dedicated mother of a child with feeding difficulties, about the complexities of pediatric feeding disorders. Jaclyn and Athena share their personal and professional experiences, emphasizing the importance of early intervention, advocacy, and comprehensive resources. They...
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.