For many families, going home from the hospital feels like the finish line. But what happens when the emotional impact of a medical experience lingers long after discharge?

On this episode of Inside the Children's Hospital, Katie Taylor sits down with Jen Aspengren, founder of Alongside Network, to discuss pediatric medical traumatic stress (PMTS), a common yet often overlooked experience that affects children, parents, siblings, and caregivers following serious medical events.

Jen shares her family's journey after her infant son underwent life-saving airway surgery at just seven months old. While his physical recovery went well, the emotional effects lasted for years, leading Jen to discover a significant gap in support for families navigating life after hospitalization.

Together, Katie and Jen explore:

• Jen's son's diagnosis of congenital subglottic stenosis and emergency airway surgery

• The unexpected emotional toll that followed after returning home

• What pediatric medical traumatic stress (PMTS) is and how it affects the entire family

• Common signs of traumatic stress in children, parents, and caregivers

• Why many families feel isolated after discharge despite receiving excellent medical care

• The importance of validation, community, and coping skills during recovery

• How small moments of connection from healthcare providers can build trust and resilience

• The impact of emotional support on long-term health outcomes and medical adherence

• How Alongside Network is helping families and healthcare providers better navigate medical trauma

Jen also shares practical insights for healthcare professionals, highlighting how simple actions—such as a follow-up phone call or a few moments of acknowledgment—can make a lasting difference for families facing difficult diagnoses and hospitalizations.

This conversation is a powerful reminder that healing doesn't end when a child leaves the hospital. Supporting the emotional well-being of children, parents, and caregivers is an essential part of recovery.

Jen Aspengren is the founder of Alongside Network, a nonprofit organization dedicated to helping families and healthcare providers address pediatric medical traumatic stress. Prior to founding Alongside, Jen spent over 20 years working in systems-change initiatives and supporting social entrepreneurs around the world. Today, she combines her professional expertise with her lived experience as a healthcare parent to improve support systems for families navigating medical challenges.

Alongside Network works to ensure that families affected by pediatric illness, injury, and hospitalization have access to the emotional support they need during and after medical experiences.

One of their core offerings is a free six-week virtual well-being program for parents and caregivers based on the evidence-based Take a Breath curriculum developed at the Royal Children's Hospital in Melbourne, Australia. The program focuses on:

• Validation of family experiences

• Building supportive community connections

• Developing coping and resilience skills

• Learn more about Alongside Network: https://www.alongsidenetwork.org

• Instagram: @childlifeoncall + @insidethechildrenshospital

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• Visit insidethechildrenshospital.com to search stories and episodes easily

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Medical information shared in this episode is not a substitute for professional medical advice. Please consult your care team for guidance specific to your child and family.

Pediatric Medical Traumatic Stress, Medical Trauma, Medical Parenting, Child Life Specialist, Family-Centered Care, Pediatric Mental Health, Caregiver Support, Pediatric Hospitalization, Trauma-Informed Care, Family Resilience

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 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.

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.

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 podcast@childlifeoncall.com 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

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• Visit insidethechildrenshospital.com to search stories and episodes easily
  
  

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• 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