Inside the Children's Hospital

Supporting Families in Pediatric Healthcare: Insights from Parent Caregivers
In this episode, we explore the experiences of parent caregivers navigating their child's complex health journeys, emphasizing the importance of advocacy, sharing stories, and hospital-family collaboration. Join us as these incredible parents discuss how they advocate for their children, the role of social media in building community, and what hospital leadership can do to improve family-centered care.Key topics covered:
Why parents start sharing their child's medical journey online and the impact of community support

The evolving nature of sharing sensitive health information as children grow

How hospital staff and leadership can support effective communication and continuity of care

The importance of family system support and staff retention for a positive hospital experience

Personal reflections on speaking up at the bedside and overcoming advocacy barriers

Resources and advocacy initiatives led by parent caregivers, including support groups and educational tools

Timestamps: 00:46 - Introduction to the episode and guest caregivers' perspectives
01:47 - The role of social media in sharing real-time hospital experiences
05:56 - Reasons behind sharing stories online and the community that forms
09:15 - How sharing supports advocacy and awareness efforts
13:08 - Balancing transparency and privacy when sharing health updates
15:15 - Evolving sharing practices as children grow older
18:57 - Privacy considerations for children with medical needs
21:42 - What hospital staff and leadership can do to improve family experiences
24:22 - The importance of continuity of care and staff retention
28:43 - Overcoming barriers to speaking up at the bedside
33:08 - Building trust and advocacy in healthcare teams
38:32 - Supporting parental mental health and caregiver well-being
44:03 - Strategies for effective parent-physician communication
49:38 - Parent-led initiatives and resources to empower families
51:45 - Current projects and ways to connect with the speakers
55:12 - Closing remarks and gratitudeResources & Links:
Child Life On Call

Inside the Children's Hospital Podcast

Brave Bears Co

Medical Moms of NICU

iROC Research Studies

MedicalMom Tips & Resources

Connect with the Guests:
Lyndsey Fedorko - LinkedIn | Instagram

Kate Kostolansky - LinkedIn

Tanisha Wormley - LinkedIn

Follow Katie Taylor for more insights

This episode highlights how sharing personal journeys fosters community, advocacy, and system improvements—empowering families to be active participants in healthcare.
 
Instagram.com/childlifeoncall
 
The Inside the Children's Hospital podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.

What happens when a diagnosis labeled "lethal" doesn't tell the full story?
In this episode of Inside the Children's Hospital, Katie Taylor sits down with Nicole, a mom of five, who shares her daughter Charlotte's journey with Trisomy 13—a diagnosis often associated with limited survival and quality of life.
After receiving devastating news over the phone while at work, Nicole and her husband were told their daughter likely wouldn't survive. But instead of accepting that narrative, they sought out information, second opinions, and a care team willing to partner with them.
From navigating medical bias and a complicated NICU stay to bringing Charlotte home without nursing support, Nicole shares what it really looks like to parent a medically complex child—and the joy that exists alongside the challenges.
This conversation highlights the importance of advocacy, informed decision-making, and viewing each child as an individual—not just a diagnosis.
You'll hear:
What it was like to receive a Trisomy 13 diagnosis unexpectedly and over the phone

How Nicole and her husband navigated conflicting medical opinions and bias

The critical role of second opinions and finding the right care team

What life looks like caring for a child with a trach, ventilator, and G-tube

How siblings adjusted and built meaningful relationships with Charlotte

The reality of parenting without in-home nursing support

Why quality of life is often misunderstood—and deeply personal

This is a story of advocacy, resilience, and redefining what's possible
What You'll Learn in This Episode
What Trisomy 13 is and how it can present differently in every child

Why it's important to ask questions and advocate within the healthcare system

How medical bias can impact care decisions—and how to navigate it

The value of support groups and connecting with other families

What daily life can look like for families of medically complex children

How siblings adapt and grow in families with high medical needs

Why "quality of life" is subjective and should center the family's perspective

Key Takeaway
A diagnosis does not define a child's life—and when families are given the space, support, and information to make informed decisions, they can create a path filled with joy, connection, and meaning.
Resources Mentioned
SOFT (Support Organization for Trisomy 13, 18, and Related Disorders)
Extra to Love
Hope for Trisomy
Emersynn Isla Shining Star Foundation
Asher's Answer
Trisomy 13 & 18 Parent Support Groups (Facebook communities)
Understanding Trisomy 13
Genetic and Rare Diseases Information Center (GARD)
https://rarediseases.info.nih.gov
AAP Article: Guidance for Caring for Infants and Children with Trisomy 13 
Follow Charlotte on Facebook
This episode is a powerful reminder that behind every diagnosis is a child, a family, and a story that deserves to be fully seen and understood.

If you liked this episode, listen to these Inside the Children's Hospital Episodes:
A daughter with Trisomy 18
Trisomy 21 Story
 
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The medical information provided is not a substitute for professional advice; please consult your healthcare team.

Key Search Terms
Trisomy 13, Patau syndrome, Trisomy 13 prognosis, Trisomy 13 life expectancy, Trisomy 13 baby thriving, Trisomy 13 and 18 support, SOFT organization Trisomy, NIPT high risk results, amniocentesis Trisomy 13, medical advocacy NICU, DNR without consent NICU, hospital transfer NICU, medically complex child at home, trach and ventilator at home baby, pediatric rare diagnosis, child life specialist NICU siblings, NICU sibling visits, postpartum depression NICU, Trisomy 13 quality of life, rare chromosome disorder support, AAP Trisomy 13 standards of care

What does it look like when life changes in an instant—and a family learns to navigate the unimaginable?
In this episode of Inside the Children's Hospital, Katie Taylor sits down with Marah, a mom of four, who shares her daughter Abigail's journey after a cardiac arrest at just nine days old. What began as a healthy twin pregnancy quickly shifted into a complex medical path involving a NICU stay, life support, and long-term care needs.
As Marah and her husband entered the world of medical parenting, they faced fear, uncertainty, and overwhelming decisions. Through it all, they leaned on their care team, family support, and each other—learning how to advocate, adapt, and ultimately find moments of joy within the journey.
This conversation highlights the realities of raising a medically complex child, the power of community, and how resilience is built over time.
You'll hear:
What it was like navigating a sudden cardiac arrest in a newborn

The early days in the NICU and learning to care for a medically complex child

How Marah advocated for family presence and support during hospitalization

The transition from crisis to confidence in managing trach and G-tube care

How community, connection, and shared experiences shaped their journey

The emotional realities of ongoing medical challenges, including epilepsy

This is a story of advocacy, growth, and finding strength in the most unexpected places.
What You'll Learn in This Episode
Why learning CPR and emergency preparedness can be life-saving for families

How to advocate for your child and communicate your needs with care teams

The role of multidisciplinary care in managing complex medical conditions

What life at home can look like with medical equipment and home nursing support

How community and peer support impact long-term coping and resilience

The importance of asking for help and building a sustainable support system

How perspectives can shift from grief to gratitude over time

 
Key Takeaways
Even in the most overwhelming moments, support, advocacy, and connection can carry families forward—and help transform crisis into a new kind of strength.
 
Connect with Marah
Instagram: In Good Complexity
Resources Mentioned
Emergency Preparedness for Families
Infant & Child CPR (American Red Cross)
https://www.redcross.org/take-a-class/cpr/performing-cpr/child-baby-cpr
Trach & G-Tube Care Resources
Feeding Tube Awareness Foundation
https://www.feedingtubeawareness.org
Building Community & Support
Parent to Parent USA
https://www.p2pusa.org
Trach Support
Mom's of Trach Babies
https://www.facebook.com/groups/momsoftrachbabies/
 
Connect with Us
Subscribe: Never miss an episode on Apple Podcasts or Spotify.



Visit insidethechildrenshospital.com to search stories and episodes easily



Follow us on Instagram for updates and opportunities to connect with other parents



Download SupportSpot: receive Child Life tools at your fingertips.



Leave a Review: It helps other families find us and access our resources!

Medical information provided is not a substitute for professional advice—please consult your care team.

Pediatric Health, Medical Parenting, NICU Journey, Infant Cardiac Arrest, Medically Complex Child, Children's Hospital, Pediatric Critical Care, Family-Centered Care, Patient Advocacy, Tracheostomy, G-Tube Feeding, Epilepsy in Children, Special Needs Parenting, Caregiver Support, Resilience

What happens when your child seems sick, but everything keeps coming back normal?
For a lot of parents, the scariest part isn't the diagnosis. It's the not knowing. It's being told everything looks fine when your gut is telling you something is off.
This week, Katie sits down with Kayleigh, a medical assistant and mom of three, to share the story of her daughter Kanessa. Almost a year after a freak eye injury that seemed to heal, Kanessa suddenly got sick. At first, it looked like a simple virus. But within days, things escalated fast.
Kaylee shares what it was like trying to make sense of symptoms that didn't quite add up. Normal test results. A child who seemed okay one minute and not the next. And that moment when everything changed with one scan.
From there, their world shifted quickly. A brain bleed. A diagnosis of bacterial meningitis. Emergency surgery. A 40-day hospital stay. Kaylee talks about what it took to keep going through all of it, while also caring for a newborn and being away from her other child.
She also shares how she supported Kanessa through it all. Being honest about what was happening. Preparing her for procedures. Letting her ask questions. And leaning on Child Life in a way that made a huge difference for both of them.
If you've ever wondered if you're overreacting or if you should push for more answers, this episode will stay with you. Kaylee's story is a reminder to trust yourself and keep advocating.
This episode is sponsored by Gebauer PainEase®. We're so grateful for their support. To learn more about this product, visit their website.
This is our 300th episode, which feels pretty surreal. We're so grateful you're here.
Special Giveaway ☕️Your support means so much to us, and we're truly grateful for this community. As a small thank you, we're offering a $10 Starbucks gift card to the first 20 listeners who leave a review. If the podcast has made an impact on you, we'd love to hear your thoughts. Simply screenshot your review and email it to [email protected] to claim your gift. Thank you for being part of this journey with us 💛

Resources & Ways to Connect
 Connect with Kaleigh on Instagram
Facebook Meningitis Support Group
 
Connect with Us
Subscribe: Never miss an episode on Apple Podcasts or Spotify.



Visit insidethechildrenshospital.com to search stories and episodes easily



Follow us on Instagram for updates and opportunities to connect with other parents



Download SupportSpot: receive Child Life tools at your fingertips.



Leave a Review: It helps other families find us and access our resources!

Medical information provided is not a substitute for professional advice—please consult your care team.


Keywords:
bacterial meningitis child story, pediatric brain hemorrhage, delayed diagnosis child illness, parenting through medical trauma, child life support hospital, pediatric emergency story, advocating for your child medical care, cochlear implant child, hearing loss after meningitis, navigating pediatric hospitalization, medical parent journey, trusting parental instincts

What happens when your child already senses something life-changing—before anyone has found the words to say it out loud?
When serious illness enters a family, children often understand more than we realize. And for caregivers, the challenge becomes not only navigating medical decisions, but also finding the right way to support their children through it all.
This week, Katie sits down with Anna Lonon, founder of the Lonon Foundation, to share her family's story of navigating cancer when her husband Michael was diagnosed with stage three head and neck cancer at just 29 years old. While raising a young son and later welcoming a newborn daughter, Anna faced the unimaginable reality of caregiving, loss, and parenting through profound uncertainty.
Anna opens up about what it looked like to balance hospital visits, therapies, and daily life, and the emotional toll of making impossible decisions while trying to hold her family together. She shares powerful moments, including the realization that her young son understood far more about his father's illness than anyone had explained, and how that shaped the way she approached communication in the years that followed.
After later facing her own cancer diagnosis, Anna made a different choice—seeking out child life support early to guide honest, developmentally appropriate conversations with her children. Through her experiences, she highlights the importance of listening to children's cues, trusting your instincts as a parent, and creating space for both grief and resilience.
If you've ever struggled with how to talk to your child about illness, felt overwhelmed as a caregiver, or wondered how to support your family through uncertainty, this conversation offers validation, insight, and hope.
This episode is sponsored by Gebauer PainEase®. We extend our sincere gratitude to Gebauer PainEase® for supporting this episode. To learn more about this product, visit their website.
Resources from today's episode:
Visit the Lonon Foundation website
Pickles Group
Wonders & Worries
Connect with Us
Subscribe: Never miss an episode on Apple Podcasts or Spotify.



Visit insidethechildrenshospital.com to search stories and episodes easily



Follow us on Instagram for updates and opportunities to connect with other parents



Download SupportSpot: receive Child Life tools at your fingertips.



Leave a Review: It helps other families find us and access our resources!

Medical information provided is not a substitute for professional advice—please consult your care team.
 
Keywords:
parent cancer child support, talking to kids about cancer, caregiver mental load, parenting through illness, child life specialist support, family coping with cancer, grief and parenting, pediatric emotional support, supporting children through loss, caregiver burnout, trauma-informed parenting, childhood understanding of illness, cancer impact on families