232: Preparing and Supporting your child: A son with Breath Holding Spells-Alessandra's Story

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"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 Website
• Download 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.

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