Inside the Children's Hospital

Latest Episodes:

219: 60 Years Later: Reflecting on a Daughter with Ichthyosis May 22, 2024

Show notes

"We, we weren't letting those people push us around because, believe it or not, living with us 24 hours a day, we knew more than some of the doctors." - Skip Vilas

In this heartfelt episode of the Child Life On Call podcast, host and CCLS Katie Taylor interviews Deb Vilas, an expert child life specialist, alongside her parents, Skip and Joyce Vilas. They share their story spanning over 60 years, recounting the challenges and triumphs of raising Deb, who was born with ichthyosis, a rare skin condition. The episode dives deep into the emotional and medical journey of Deb's early years, the evolution of parental advocacy, and the power of family and community support in navigating the complexities of pediatric healthcare.

Takeaways from Skip and Joyce:

The Power of Advocacy: Joyce and Skip's relentless advocacy for Deb's health and well-being, challenging medical professionals when necessary.

Importance of Parental Presence: The emotional and developmental impact of parental presence and touch, even in limited hospital circumstances.

Resilience and Adaptation: Deb's strength and resilience in the face of social challenges and medical hurdles.

Evolution of Pediatric Care: A reflection on how pediatric care has evolved, highlighting the necessity of family-centered approaches.

"The advocacy role is important. And of course, that's one of the roles that Child Life has for children." - Skip Vilas

Resources and Tips:

Foundation for Ichthyosis and Related Skin Types (FIRST): Provides support and resources for families dealing with ichthyosis. Learn more

National Conferences by FIRST: Opportunities for families to connect and share experiences.

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

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

218: How NOT to Give Families Medical Information - A son with CHARGE syndrome, Taylor's Story May 15, 2024

Show notes

Today's guest is Taylor Happley, a mom of a child with CHARGE syndrome.

"We need to figure out why and how to help these kids get the medical attention that they need."

In today's episode, Katie Taylor had an important conversation with Taylor Happley, whose son has CHARGE syndrome. Taylor's prenatal journey was filled with miscommunication and emotional challenges. Taylor's story of learning about her son's diagnosis of CHARGE Syndrome in less-than-ideal circumstances underscores the need for healthcare professionals to provide information in ways that are both sensitive and supportive.

This conversation shines a light on the crucial role of empathy and effective communication in pediatric healthcare. Taylor also acts as a powerful reminder of the resilience of families navigating complex medical conditions.

"There's power in sharing stories, and that power multiplies when you can listen to other parents who have walked a similar path to yours."

What you can learn from this episode:

Communication is Key: Healthcare providers must deliver information compassionately to support families effectively during challenging times.

Parent Advocacy: Taylor's story highlights the importance of parental advocacy in navigating the complexities of a child's medical condition.

Importance of Support Networks: Connecting with other parents and finding community support can be crucial for managing the emotional toll of a child's diagnosis.

Learning through Experience: Families often develop a deep understanding of their child's condition, which can empower them to advocate effectively within the healthcare system.

Resilience and Hope: Despite the challenges, there is a powerful narrative of resilience and hope that can inspire other families in similar situations.

Resources and Tips:

CHARGE Syndrome Foundation: Provides invaluable resources for families and professionals

CHARGE Syndrome Foundation Support Group on Facebook

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Learn 6 Positions to Help Kids Feel Comfortable and Safe during Medical Procedures

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

Meet the host:

Instagram.com/childlifeoncall

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

217: Navigating IEPs, Infantile Spasms, NICU & STXBP1 - Erin's Story May 08, 2024

Show notes

Today's guest is Erin Prosser, an IEP expert consultant and a mom of a daughter diagnosed with STXBP1.

"You don't see it coming. Being a rare disease parent hits you like a ton of bricks."

In today's episode Katie Taylor had the chance to speak with Erin Prosser, an IEP expert consultant and a mom navigating the complex world of pediatric healthcare due to her daughter Lucy's rare neurodevelopmental disorder. Erin shares her profound journey from a second-time, confident mom to a whole new role as a crucial advocate for her daughter's specialized needs. The challenges and triumphs of parenting Lucy led Erin to a new career path helping other parents ensure necessary services and support for their children. This episode dives deep into the realities and emotional challenges of parenting a child with significant medical needs, including the strategies Erin has employed to ensure her daughter receives the best possible care and education through effective IEP management.

"I think the best kinds of experts are those who have walked the path themselves. The best teachers are the ones who have been students and have had to have a process and said, this can be better and I want to fill it." Key Insights and Lessons:

Early Identification and Advocacy: The importance of recognizing symptoms early, advocating for proper diagnosis, and persistently seeking appropriate treatments.

Navigating IEPs and Special Education: Listeners gain an in-depth look at navigating Individualized Education Programs (IEPs), where Erin uses her personal and professional experiences to help other parents secure necessary services and support for their children.

Community and Support Systems: The crucial role of community support and early intervention therapies in managing children's condition and the value of connecting with other families facing similar challenges.

Mental Health and Coping Strategies: The significance of mental health for parents in similar situations is underscored, with therapy and community support as coping tools.

Resources and Tips:

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Listen to another episode of the Child Life On Call Podcast discussing rare diseases here.

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

Meet the host:

Instagram.com/childlifeoncall

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

216: How to talk with Kids about Child Abuse - Jane's Story [Repost] Apr 24, 2024

Show notes

April is Child Abuse Prevention Awareness Month. We have reposted this episode to bring awareness and give you tangible tools to speak with your kids about child abuse.

Today's guest expert is Jane Donovan, who is a child abuse prevention advocate.

"And like we say in child life, you have to prepare. So you know what to expect and you know how to cope with what's going to happen next." - Katie Taylor, CLOC

In this crucial episode, Katie Taylor is joined by a child abuse prevention advocate, Jane Donovan, to delve into the sensitive and vital topic of child protection within the healthcare system. The discussion focuses on how child life specialists can play a crucial role in identifying and responding to signs of abuse in children. Through detailed education on proper documentation, response strategies, and the importance of preparation, this episode provides essential insights for any adult from child life specialists to parents, underscoring the role of education in prevention and the duty to teach children how to keep their bodies safe.

Key Insights and Lessons:

Importance of Proper Documentation: Understanding how accurate and detailed documentation can aid in protecting children and supporting further investigations.
Recognizing Signs and Symptoms: Learning the subtle signs and symptoms of abuse to ensure early intervention and support for the affected children.
Educational Role of Child Life Specialists: How child life specialists can educate and prepare themselves to better support children who may disclose abuse.
Empowering Children: Strategies for teaching children about body safety and self-protection in a manner that is appropriate and empowering.

Resources and Tips:

Whether you are a parent or professional, we want you to join our community. Sign up for our newsletter here.

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

Meet the host:

Instagram.com/childlifeoncall

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

215: Ruptured Appendix: Emergent Surgery, 6 Days in the Hospital & Struggles to Discharge - Aspen's Story Apr 17, 2024

Show notes

"I've learned so much in this whole process. It's like you have a depth inside of you that resurrects as an advocate and high alert, and it lives inside of you when you need it."

-Aspen, Willa's Mom

In this episode of Child Life On Call, host Katie Taylor and guest Aspen share an intense and educational journey through pediatric appendicitis. Aspen recounts her daughter Willa's sudden illness, misdiagnosis, and the emotional rollercoaster of a ruptured appendix leading to urgent surgery. This story not only highlights the challenges and nuances of navigating pediatric healthcare, but also underscores the importance of parental intuition and the vital role of child life specialists in supporting both children and their families during medical crises.

Katie and Aspen dive into topics such as parental intuition, medical advocacy, and the impact child life can make. Aspen's experience stresses the importance of trusting your parental instincts when you feel the medical assessments are overlooking the correct diagnosis. The conversation also discusses the significant positive impact of child life specialists in managing a child's anxiety and discomfort through creative and empathetic interventions, as well as the emotional toll on parents and the necessity of finding support during a child's medical emergency.

"I wish I would have pressed harder to say, let's just do a scan. What's the worst thing that's gonna happen?

Aspen, Willa's Mom

The resources mentioned in this episode are:

Child Life On Call: Access comprehensive guides and support for parents and healthcare providers on Child Life On Call.
Hospital Playrooms: The therapeutic benefits of play, the use of hospital playrooms to aid recovery and normalcy for hospitalized children. Read more about creating a comfortable and child-friendly environment in medical facilities here
Preparation Books: The importance of specialized books for children undergoing medical procedures to help them understand and cope with their experiences.

Engage with us on Instagram @ChildLifeOnCall for more stories from parents and practical tips. Check out our Amazon storefront for recommended products that support your child's development. Interested in enhancing your organization's pediatric care? Request a demo of the Child Life On Call app today!

About Katie Taylor, CCLS and Child Life On Call:

Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform revolutionizing pediatric healthcare by putting parents at the center of the medical journey. With over 13 years of experience as a certified child life specialist, Katie has made significant contributions to the field of child life and the families she's served with over a decade of working at the bedside. She is an accomplished author, engaging child life and entrepreneurship speaker, and the Child Life On Call Podcast host. Katie's work emphasizes the vital role of child life services in supporting caregivers and enhancing children's medical journeys.

Learn 6 Positions to Help Kids Feel Comfortable and Safe During Procedures

Instagram | LinkedIn | Amazon

214: Sacrifice, Advocacy, Joy: Raising a Son with End Stage Kidney Disease - The Ransome Family's Story Apr 10, 2024

Show notes

"Sometimes it's really therapeutic though to remember all that you have gone through because I feel like there are times when we look at each other and I'm like how did we get here?" -Tayler Ransome

We're grateful for our sponsor for this episode, Nestle Health Science, and are thrilled to share their incredible MyTubeFeeding.com/ChildLifeOnCall website, your go-to online resource for valuable information and support.

In this episode, Katie Taylor welcomes the Ransome family, known to many as the Ransome Fam on social media, where they share their daily life and the challenges of managing their son Sully's end-stage kidney disease.

From their initial shock and learning curve as medical parents to the powerful advocacy that led them to seek better care, the Ransomes' story is a beacon of resilience and hope. Their journey underscores the importance of community, the power of advocating for your child and finding joy amidst life's toughest challenges.

Key Insights:

The critical role of advocacy in securing the best possible care for your child, is illustrated by the Ransome's transition to a more capable hospital.
How establishing a disciplined routine for medical care fosters a sense of normalcy and control.
The unexpected journey of becoming medical parents, including the steep learning curve and the importance of specific communication with family and friends.
Discovering inner strength, resilience, and the ability to find joy in the most challenging circumstances.

"Seeing how ceaseless his joy is... reminds me every day of the strength and beauty in our life, no matter the circumstances." – Tayler Ransome

Resources and Tips Shared in the Episode:

The Ransome Family's Daily Routine: A glimpse into managing home dialysis and medical care with love and dedication.
Advocating for Your Child in the Healthcare System: Tips from the Ransome's experience on how to navigate healthcare providers and ensure your child receives the best possible care.
Coping with the Unexpected: Strategies for dealing with the initial shock of a diagnosis and finding support.

We want you to join our community!

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

Meet the host:

Instagram.com/childlifeoncall

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

213: Parents, CCLS, Students: Show Up Exactly As You Are Apr 03, 2024

Show notes

In This Episode:

Katie Taylor goes off the beaten path in this special episode to share a profound moment of inspiration that struck her. This episode is a heartfelt message to child life specialists, students, and parents, emphasizing the importance of showing up as you are, without the burden of imposter syndrome.

Key Highlights:

A Different Kind of Episode: Katie shares her spontaneous thoughts that came from a moment of inspiration, promising that the usual stories from the field and parental perspectives will return in future episodes.
Message of Empowerment: The core message is about overcoming the misconception of imposter syndrome. It's about recognizing that being in the room is an acknowledgment of one's worth and contributions.
Inspirational Source: Katie discusses insights gained from listening to Reshma Saujani, CEO of Girls Who Code, and her philosophy of bravery over perfection, which struck a chord with Katie in relation to the child life profession and parental involvement in healthcare.
For Child Life Specialists: A call to recognize the value they bring to healthcare settings, emphasizing that healthcare teams are fortunate to have them participate.
For Students: Encouragement to embrace their internships and opportunities without doubting their deservedness or capability.
For Parents: An affirmation of the crucial role parents play when involved in their child's care, emphasizing that their presence inherently improves the healthcare experience for their child.

Katie wraps up with a reminder of the importance of showing up authentically in every room you find yourself in, celebrating Child Life Month, and expressing gratitude to her listeners.

Resources and Next Steps:

Visit Child Life On Call for resources tailored to parents, professionals, and healthcare providers.
Explore opportunities for Child Life Specialists, including PDUs and support through the Child Life Circle.
Parents can find a starter kit to navigate their child's healthcare journey.
Healthcare professionals are invited to take a clinician course to enhance pediatric care skills.

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

Meet the host:

Instagram.com/childlifeoncall

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

212: CCLS Story: 18 Years of Supporting Kidney Families -Julie's Story Mar 27, 2024

Show notes

"As a child life specialist, watching my tiniest patients grow and accomplish so many things is my favorite part of the job." - Julie, Certified Child Life Specialist

Episode Summary:

In this heartfelt episode of Child Life On Call, we celebrate Child Life Month by diving deep into the dedicated world of child life specialists and the resilient families they support. Host Katie Taylor talks to Julie, a remarkable child life specialist with 18 years of experience in the renal service at Texas Children's Hospital in Houston, Texas. Julie shares her profound journey of supporting children with end-stage renal disease and their families, emphasizing the incredible growth and accomplishments of her patients, from NICU discharge to life milestones like graduation and beyond. This episode shines a light on the unseen challenges and invisible diseases, offering a beacon of hope and understanding for families navigating similar paths.

Key Insights and Lessons:

The Power of Specialization: Julie's dedication to the renal unit for nearly two decades highlights the impact of specialized care and deep knowledge in supporting families through long-term medical journeys.
Invisible Illness Awareness: Kidney and renal diseases are often "invisible illnesses," where children may not appear sick externally, challenging families to seek and receive support from their communities.
Advancements in Treatment: Remarkable advancements in transplant medicine and the introduction of new facilities like a dedicated dialysis unit represent hope and progress in the care of patients with kidney disease.
Comprehensive Family Support: The role of child life specialists in educating and supporting families beyond medical interventions, helping them navigate school, social challenges, and encouraging participation in community events.
Celebrating Growth and Achievements: Witnessing the development and achievements of patients, such as learning to walk, talk, and engage with their favorite activities post-transplant, underscores the transformative impact of child life specialists.

"We actually just opened up a brand-new dialysis unit at our hospital...watching that come to fruition from having been a dream of the department for so long to actually happening has been amazing." - Julie

Resources and Tips:

Kid's Health: Offers kid-friendly explanations and illustrations about medical conditions and treatments.
National Kidney Foundation: Provides extensive resources and information for families dealing with kidney disease.
Kidney School: An educational platform with modules for healthcare team members and families to learn about kidney disease.

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

Meet the host:

Instagram.com/childlifeoncall

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

211: A Son Born with End-Stage Kidney Disease (Part 1): Lyndsey's Story Mar 20, 2024

Show notes

"Having a medically complex child, it's like everything's fine. And then, you know, we have a morning where we've thrown up a lot or our blood pressure is too low, and it just doesn't look good. You just never know what you're going to get." - Lyndsey, Episode 211

In this deeply moving episode, we are joined by Lyndsey, who shares the compelling journey of her son James's battle with post-urethral valves before birth, leading to kidney issues and eventually a kidney transplant. Through her narrative, we learn about the rollercoaster of emotions, the challenges of navigating the healthcare system, and the critical role of child life specialists in providing support. Lyndsey's story is one of immense courage, the power of hope, and the transformative impact of compassionate care on families navigating pediatric health challenges.

"Having a medically complex child is like everything's fine until it's not." - Lyndsey

Key Insights:

The Crucial Role of Early Diagnosis: Lyndsey's experience underscores the importance of prenatal screenings and the challenges of facing unexpected medical conditions before birth.
Support Systems Are Key: The journey highlights how family, medical teams, and child life specialists form a crucial support network that helps navigate the complexities of a child's medical care.
Resilience in the Face of Uncertainty: The family's story is a testament to the resilience required to face the unknown and advocate for a child's health and well-being.
The Importance of Child Life Specialists: Lyndsey's story reinforces how child life specialists play a vital role in supporting both the child and the family through medical procedures, hospitalizations, and the overall healthcare journey.

How Child Life Specialists Can Help:

Understanding Post-Urethral Valves: Providing educational materials to help parents understand complex medical conditions.
Building a Support Network: Encouraging families to connect with others through support groups and communities.
Coping Strategies: Sharing resources and strategies for families to manage stress and maintain emotional well-being.

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Here are some of our favorite affiliates that help promote positive coping for kids:

Get 20% of toys, fidgets and more at Smilemakers.com using ONCALL20 at checkout

10% off Coping Kits and other select merchandise at Present Over Perfect

Meet the host:

Instagram.com/childlifeoncall

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan

210: Connection, Healing, and Love: Insights from Patrice Karst, Author of The Invisible String Mar 13, 2024

Show notes

"Love is the most powerful force in the universe, and the invisible string is a testament to the connections that bind us all." - Patrice Karst

In this special Child Life Month episode, Katie Taylor sits down with Patrice Karst, the beloved author of "The Invisible String" and several other impactful books. They explore Patrice's journey from personal challenges to becoming a source of comfort and connection for families worldwide. This conversation delves into the power of storytelling in addressing themes of separation, loss, and the enduring strength of love. Patrice shares her inspiration behind "The Invisible String" and its profound impact on both children and adults, emphasizing our universal connectedness and the healing power of love.

"The messages of love and connection I write about are not just for children; they resonate with the inner child in all of us." - Patrice Karst

Key Insights or Lessons Learned:

The concept of "the invisible string" as a universal metaphor for love and connection that transcends physical presence and even loss.
The importance of acknowledging and discussing feelings of loneliness and the power of finding one's inner best friend, as explored in "Ruby and Lonely."
How creativity and storytelling can be therapeutic, providing solace and understanding in times of grief and separation.
The role of child life specialists in utilizing literature like Patrice's to foster emotional safety and understanding among families facing medical challenges.

"Every letter I receive is a reminder of the profound impact stories can have on healing and connection." - Patrice Karst

Resources and Tips Shared in the Episode:

"The Invisible String" by Patrice Karst: A must-read for anyone seeking to understand and teach about the bonds of love.
Other books by Patrice Karst
Child Life On Call App: Explore this invaluable tool for additional support and resources for navigating pediatric healthcare challenges. Request a Demo.

Whether you're a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

Meet the host:

Instagram.com/childlifeoncall

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan