• 234: Expert Child Life Tips for Supporting Children Through an Upper GI Procedure
    Nov 13 2024
    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 work in pediatric radiology and GI. From scheduling the procedure to supporting children emotionally and physically, Katie and Emily guide listeners through every step of the process for both kids and parents. Whether you're a parent or a professional, this episode is packed with advice to help create an emotionally safe and successful experience for children. A HUGE thank you to our sponsors: BeginHealth Prebiotics: Nutrition support for healthy digestion. Use code “ChildLifeOnCall” to get 25 percent off. 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 it convenient for daily use without altering the flavor of your child’s favorite beverages. 25% off selected products: Daily Growing Up Prebiotics 28-Pack, Daily Growing Up Prebiotics Family Size, Double Subscription - Prebiotics, Families On-The-Go, Beginbaby Pre + Pro 28-Pack, Poop Tracker Gamecards and Stickers (6)🥇Applies to subscription and one-time ordersApplies to first 1 subscription ordersLimited to one use per customer Key Insights Preparation is Key: Schedule the procedure around your child’s routine (e.g., feeding and nap times) and advocate for care at a pediatric facility. Child-Led Support: Tailor explanations based on your child’s age—toddlers need short, concrete steps, while older children benefit from a detailed walkthrough. Creative Coping Strategies: Bring familiar items like a favorite cup or lovey, and offer simple choices (e.g., flavoring options for the barium). Parent Emotional Regulation: Stay calm and positive, which helps children feel safe and supported during the procedure. Teamwork with Staff: Collaborate with radiology staff and child life specialists to create a smooth experience tailored to your child’s needs. Resources and Tips: Support Spot App: Step-by-step guidance and visuals for procedures like the upper GI. Download here Age-Appropriate Preparation Tips: This episode provides strategies tailored to each age group, offering practical and developmentally appropriate tips to help ease anxiety and ensure a smoother experience for both kids and caregivers. When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot WebsiteDownload SupportSpot iOS or Android 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. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan
    Show more Show less
    42 mins
  • 233: From NICU Nurse to NICU Mom: Premature Twins born at 33 weeks - Brittney’s Story
    Oct 30 2024
    A huge thank you to our sponsor of today's podcast, Begin Health. - Use code CHILDLIFEONCALL for 25% off 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 it convenient for daily use without altering the flavor of your child’s favorite beverages. 25% off selected products: Daily Growing Up Prebiotics 28-Pack, Daily Growing Up Prebiotics Family Size, Double Subscription - Prebiotics, Families On-The-Go, Beginbaby Pre + Pro 28-Pack, Poop Tracker Gamecards and Stickers (6)🥇Applies to subscription and one-time ordersApplies to first 1 subscription ordersLimited to one use per customer "Being both a NICU nurse and a mom transformed how I view and support each child and family I work with." In this episode host Katie Taylor speaks with a NICU nurse and mother, Brittney, who shares her unique perspective on navigating the healthcare system from both sides; a NICU nurse and NICU mama. Brittany reflects on her journey as a NICU nurse who then became a NICU mom of twins, describing how her experiences inspired her to write a NICU-themed children's book and launch a publishing company. Her story highlights the emotional, mental, and logistical challenges of parenting in a NICU environment and how she uses her experiences to support families facing similar journeys. Key Insights and Lessons: Value of Empathy and Shared Experience: Brittney's journey as a NICU mom brought a new level of empathy to her work, allowing her to connect deeply with the parents she now supports. Empowering NICU Parents: Brittney emphasizes the importance of empowering parents with hands-on involvement, helping them gain confidence in their caregiving roles despite medical complexities. Advocating for Comfort in the NICU: Encouraging parents to bring personal items, create a nurturing space, and advocate for their emotional needs helps make the NICU environment feel more like home. Navigating the Unknowns of NICU Life: For Brittney, the hardest part of the NICU experience was the slow, unpredictable progress toward discharge, which she now prepares her patients’ families for, emphasizing resilience and patience. Resources and Tips: Find Brittney's resources at Thrift Publication Company. This includes: Her childrens book “Cradles of Courage: Adventures in the NICU” in both pink and blue “I am a NICU mom: Coloring Book” A NICU journal, “The Journal of Our Story: A Medical Notebook for the Organized NICU Parent.” which is designed to help parents track progress and milestones Brittney's Instagram for updates and NICU-related content: @thriftpubco When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot WebsiteDownload SupportSpot iOS or Android 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. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan
    Show more Show less
    35 mins
  • 232: Preparing and Supporting your child: A son with Breath Holding Spells-Alessandra's Story
    Oct 16 2024
    A huge thank you to our sponsor of today's podcast, Begin Health. - Use code CHILDLIFEONCALL for 25% off 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 it convenient for daily use without altering the flavor of your child’s favorite beverages. 25% off selected products: Daily Growing Up Prebiotics 28-Pack, Daily Growing Up Prebiotics Family Size, Double Subscription - Prebiotics, Families On-The-Go, Beginbaby Pre + Pro 28-Pack, Poop Tracker Gamecards and Stickers (6)🥇Applies to subscription and one-time ordersApplies to first 1 subscription ordersLimited to one use per customer "When children are better prepared for a procedure or medical situation, it doesn't eliminate all of the struggles, but it builds a level of trust." - Alessandra In this week's episode of The Child Life On Call Podcast, host Katie Taylor sits down with Alessandra, the founder of PrepMeKids, to discuss her personal journey navigating her son's rare medical condition, breath-holding spells, from the NICU to childhood. Alessandra shares the emotional toll of advocating for her son in a foreign country, where she had to bridge communication gaps and trust her instincts in a healthcare system very different from the one she knew. Her story highlights the power of preparation and communication with children, especially in medical situations, and how her personal experiences led her to create customizable books to help kids feel empowered and prepared for medical procedures. Through her experience, Alessandra emphasizes the importance of honesty, advocacy, and resilience in medical parenting. "Parents do know their children, even if they're very young, and we do have gut instincts. It's okay to ask questions and to push back." - Alessandra Key Insights: Preparation is crucial for both children and parents when facing medical procedures. Customized books like PrepMeKids help reduce anxiety and build trust. Advocacy is an essential skill for parents, especially when navigating different healthcare systems. Alessandra emphasizes trusting your gut and asking questions, even when it's uncomfortable. Honesty with children about what to expect in medical procedures fosters trust and resilience; Alessandra narrates her son’s breath-holding spells to help him understand what’s happening. Tracking and organizing medical symptoms can help parents notice patterns and advocate for appropriate care. But knowing when to stop tracking is essential for mental well-being. Emotional overwhelm is common for parents and caregivers. Finding tools and strategies to manage stress, like Alessandra's tips on preparation, is key to long-term resilience. Resources and Tips Shared in the Episode: PrepMeKids: Customizable books designed to help children prepare for medical procedures. Support Spot App: A tool to help parents track symptoms, write down questions, and advocate for their children during medical appointments. What’s an IV: A children’s book by child life specialist Melissa Fadel and nurse Rosemary Pang, aimed at preparing kids for the IV process in a simple, non-scary way. @PedsDocTalk on Instagram recently shared a video of a child having a breath-holding spell that went viral. Click here to watch When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot WebsiteDownload SupportSpot iOS or Android 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 ...
    Show more Show less
    46 mins
  • 231: Child Life Specialist Secrets: Flu Shot Prep Strategies Every Parent Should Know
    Oct 7 2024
    Child Life Specialist Secrets: Flu Shot Prep Strategies Every Parent Should Know Thank you to the sponsor of today's podcast: Begin Health 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 and a digital flu shot preparation course for parents. The focus is on empowering parents and creating a positive healthcare experience for children. 00:00 Introduction to Flu Shot Preparation 01:10 Empowering Parents and Respecting Medical Professionals 03:05 Understanding the Emotional Impact of Shots 04:08 Practical Tips for Flu Shot Day 09:31 Pain Management Techniques 21:07 Post-Shot Processing and Recovery 24:37 Final Thoughts and Encouragement When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot WebsiteDownload SupportSpot iOS or Android 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. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan
    Show more Show less
    27 mins
  • 230: Navigating Childhood Cancer: Supporting families through her own experience - Heather's Story
    Sep 25 2024
    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, Begin Health. - Use code CHILDLIFEONCALL for 25% off 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 it convenient for daily use without altering the flavor of your child’s favorite beverages. 25% off selected products: Daily Growing Up Prebiotics 28-Pack, Daily Growing Up Prebiotics Family Size, Double Subscription - Prebiotics, Families On-The-Go, Beginbaby Pre + Pro 28-Pack, Poop Tracker Gamecards and Stickers (6)🥇Applies to subscription and one-time ordersApplies to first 1 subscription ordersLimited to one use per customer In this episode, Katie Taylor interviews Heather, host of the Navigating Childhood Cancer podcast and mother of a teenager diagnosed with leukemia, in honor of Childhood Cancer Awareness Month. They discuss the challenges of receiving a cancer diagnosis for your child, managing cancer treatments, including pill swallowing, and navigating parent guilt. Heather shares her family's journey and how she balanced protecting her son while also being open about her experience to support other families. Through her podcast, Heather provides a space for families to share their stories, giving listeners the strength to cope with childhood cancer. Key Insights & Lessons Learned: Pill Swallowing is a Process: Sometimes the goal isn’t mastering a technique but simply finding what works, even if it means grinding pills for an extended period. The Importance of Listening to the Child: Empowering the child to make decisions about their care, like how they take their medicine, can alleviate unnecessary stress. Parent Guilt is Real, but Not Always True: Parents often struggle with feeling responsible for their child's illness, but as Heather was reminded, it's not your fault. Sharing Helps, But Boundaries Matter: Heather highlights the balance of sharing personal experiences while respecting her son's privacy, which is crucial when sharing such a sensitive journey. Resources and Tips: Navigating Childhood Cancer Podcast: Hosted by Heather, this podcast shares stories and lessons from families going through childhood cancer. Listen here Book Recommendation: What’s an IV? by Melissa Fadel and Rosemary Pang – a child-friendly guide of the IV process. Get the book here Begin Health To learn more about the sponsor of today's episode, Begin Health, click the link here to get a 25% off coupon! When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot WebsiteDownload SupportSpot iOS or Android 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. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan
    Show more Show less
    33 mins
  • 229: Trusting your parental Instincts when addressing your child's chronic pain- A son with Juvenile Arthritis- Kim’s Story
    Sep 18 2024
    "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 trusting your parental instincts, advocating for your child, and finding innovative ways to manage chronic pain, offering hope to parents in similar situations. Key Insights: Trust Your Instincts: Kim emphasizes the importance of trusting your gut as a parent and advocating persistently when something feels wrong, despite resistance from doctors. Holistic Care: The integration of multiple specialists and specialties working together in a holistic manner, including both physical and psychological treatment methods, was key to finding a comprehensive treatment plan for her son. Creative Healing: Techniques like art therapy, music therapy, and acupuncture played a significant role in managing her son’s chronic pain and improving his quality of life. Resilience Leads to Success: Despite the odds, Kim’s son went from a wheelchair to playing in the NFL, showcasing the power of determination, support, and a positive mindset. Support Networks Matter: Finding others who understand your struggles, whether through social media or hospital communities, can provide invaluable emotional and practical support. Resources and Tips: Creative Healing for Youth in Pain (CHYP): Offers free online resources for adolescents and families managing chronic pain. Visit mychipchyp.org for webinars, creative healing workshops, and more. Mindfulness & Pain Management: Dr. Zeltzer’s pioneering work in pediatric pain management focuses on rewiring the brain through techniques like self-hypnosis and mindfulness. Sour Candy Tip for Pain Management: A sour candy before a painful shot can help trick the brain into focusing on the sour taste instead of the pain. Book Reccomendation: What's an IV Start by Melissa Fatal, A Child Life Specialist, and Rosemary Peng, a nurse is a new favorite of ours, walking us through how to prep a child for an IV start. When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot WebsiteDownload SupportSpot iOS or Android 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. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan
    Show more Show less
    39 mins
  • 228: Early Diagnosis, Advocacy and Equity: A daughter with Cystic Fibrosis- Nikki's Story
    Sep 4 2024
    "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! Links and Resources: SupportSpot WebsiteDownload SupportSpot iOS or Android 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. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan
    Show more Show less
    36 mins
  • 227: Searching for a Diagnosis: A Rare Disease Mom and Advocate's Journey - ADCY5 Gay's Story
    Aug 21 2024
    "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. Gay’s insights provide invaluable advice for both child life specialists and parents and caregivers dealing with rare diseases. Key Insights: The significance of early genetic testing in providing crucial information and guiding treatment decisions. The importance of building a support network to navigate the medical and educational challenges. Staying organized and persistent in the face of numerous medical consultations and uncertainty. The emotional and psychological toll of advocating for a child with a rare disease. The role of patient advocacy in supporting families and advancing research. Resources and Tips: GeneDx: Genetic testing and counseling services. Child Neurology Foundation: Resources for fighting insurance denials and other support. Women In Bio and Athena: Support network for women in science and biotechnology. Connect with Gay on LinkedIn. When parents feel empowered, everyone wins – kids thrive and the care team excels! Links and Resources: SupportSpot WebsiteDownload SupportSpot iOS or Android 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. Instagram.com/childlifeoncall Facebook.com/childlifeoncall linkedin.com/in/kfdonovan
    Show more Show less
    38 mins