Inside the Children's Hospital

What happens when the healthcare professional becomes the parent sitting on the other side of the diagnosis?
In this episode, Katie Taylor sits down with Melissa Apa—a clinical pharmacist, diabetes educator, and mom—to share her family's journey navigating both celiac disease and type 1 diabetes with her young son. Melissa opens up about the emotional overwhelm of receiving life-changing diagnoses, even with years of medical expertise behind her, and how her family learned to adapt, advocate, and find stability in the chaos.
From replacing every pot and pan in her kitchen overnight to teaching her six-year-old how to manage his insulin pump, Melissa shares the realities of parenting a child with chronic illness while balancing work, marriage, caregiving, and the emotional toll of always being "on."
Together, Katie and Melissa explore the invisible mental load medical parents carry, the importance of empowering kids to advocate for themselves, and why support systems matter just as much as medical education.
This conversation is honest, practical, and deeply hopeful for any parent navigating a chronic diagnosis with their child.
What You'll Hear in This Episode:
The unexpected appointment that changed everything with a celiac diagnosis

Why Melissa says her entire career prepared her to care for her son

The emotional impact of becoming both a healthcare provider and a medical mom

How type 1 diabetes and celiac disease are often connected

The pressure parents feel around "good" and "bad" numbers in diabetes care

Why medical parents need systems, routines, and "go bags" to survive daily life

Teaching children to advocate for themselves in school and healthcare settings

The realities of never fully stepping away from caregiving responsibilities

How Melissa and her husband creatively protect their relationship and mental health

Why diabetes management can become more manageable with support and practice

Key Takeaways:
Chronic illness management is emotional—not just medical

Blood sugar numbers are data, not moral judgments

Kids are capable of learning and advocating for themselves earlier than we think

Systems and routines can reduce overwhelm for families

Caregivers deserve support, too

The beginning of a diagnosis journey is often the hardest part—but it won't always feel this overwhelming

About Our Guest:
Melissa Apa is a clinical pharmacist, diabetes educator, podcast host, and mom of two from Buffalo, New York. After diagnosing her son with type 1 diabetes and navigating celiac disease as a family, Melissa shifted her focus toward helping families manage chronic illness with more confidence, support, and sustainable systems. Through coaching, education, and advocacy, she helps parents move from survival mode to feeling empowered in everyday life.
Resources & Links:
Connect with Melissa on Instagram: @melissaapa_

Listen to her podcast: Insulin Inspired

Learn more about Melissa's coaching and resources on her website
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 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.
Keywords:
type 1 diabetes, celiac disease, parenting a child with diabetes, diabetes mom, medical parenting, chronic illness parenting, pediatric diabetes, celiac diagnosis, type 1 diabetes support, caregiver mental health, diabetes advocacy, medical mom podcast, child chronic illness support, parenting through diagnosis

"I kept telling her, 'We've got this.' And inside, I had no clue what was coming next."
What does it look like to be "the strong one" when your world is falling apart?
In this episode, Katie Taylor sits down with Jared Muscat—dad, surfer, and self-proclaimed "dad-vocate"—to share his family's unexpected journey into the NICU after a high-risk pregnancy. From a routine 20-week appointment to welcoming his son Ollie at just 25 weeks, Jared opens up about fear, resilience, and what it means to show up as a partner and father in crisis.
He shares the emotional weight of protecting his family while processing his own grief, the importance of finding support, and how small rituals—like late-night NICU visits and lullabies—helped him bond with his son.
This is an honest, heartfelt conversation about fatherhood, vulnerability, and the strength it takes to keep going when nothing feels certain.
What You'll Hear in This Episode:
The moment everything changed during a routine pregnancy appointment

Navigating uncertainty, fear, and decision-making as a dad and partner

The emotional experience of becoming a NICU parent overnight

How Jared balanced supporting his wife, caring for his older son, and coping himself

The power of routines, community, and finding other dads who understand

What bonding looks like in the NICU—and the moment it finally clicked

Life after the NICU and adjusting to a new normal at home

 
Key Takeaways:
Dads experience deep emotional strain in the NICU—often quietly

You don't have to carry everything alone—finding support is essential

Small, consistent rituals can create stability in chaos

Bonding doesn't always happen immediately—and that's okay

The NICU feels endless, but it won't last forever

About Our Guest:
Jared Muscat is a father of two, a marketing agency owner, and a passionate advocate for NICU dads. Through his own experience, he now supports other families navigating complex medical journeys.
Resources to Support NICU Families 
The NICU Dad Listen to Alex's Story here.

March of Dimes
Hand to Hold
Connect with Jared
Instagram
Website
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.
*]:pointer-events-auto R6Vx5W_threadScrollVars scroll-mb-[calc(var(--scroll-root-safe-area-inset-bottom,0px)+var(--thread-response-height))] scroll-mt-(--header-height)" dir="auto" data-turn-id="f5a69813-ba58-421b-bb6d-4a6cc2a82a14" data-turn-id-container="f5a69813-ba58-421b-bb6d-4a6cc2a82a14" data-testid="conversation-turn-3" data-scroll-anchor="false" data-turn="user">  


*]:pointer-events-auto R6Vx5W_threadScrollVars scroll-mb-[calc(var(--scroll-root-safe-area-inset-bottom,0px)+var(--thread-response-height))] scroll-mt-[calc(var(--header-height)+min(200px,max(70px,20svh)))]" dir="auto" data-turn-id= "request-WEB:03c19e2e-817b-42ba-b42b-4c476b05221e-3" data-turn-id-container= "request-WEB:03c19e2e-817b-42ba-b42b-4c476b05221e-3" data-testid= "conversation-turn-4" data-scroll-anchor="false" data-turn= "assistant"> Keywords: NICU dad, NICU father support, NICU dad mental health, premature baby dad, NICU parenting for dads, NICU dad podcast, NICU journey dad, father of preemie, NICU support for fathers, dad in the NICU

In this episode of Inside the Children's Hospital, Katie Taylor sits down with Dr. Matt Goldstein—physician, biotech leader, and father—who shares the story of his daughter, Havi, and her diagnosis with Tay-Sachs disease.
Despite both parents undergoing genetic screening before starting their family, a testing error led to a missed diagnosis. Javi appeared to develop typically at first, but over time, subtle changes led to a life-altering realization: she had a rare, fatal neurodegenerative condition.
As a physician, Matt was trained to solve problems. As a parent, he was driven to protect his child. But in the face of a disease with no cure, he and his wife had to redefine what "doing everything" truly meant.
From navigating complex medical decisions to choosing presence over intervention, Matt shares how their family embraced a different path—one centered on love, connection, and living fully in the time they had.
This conversation is a powerful reflection on grief, meaning, and the transformative impact of parenthood.
You'll hear:
What it was like to receive a Tay-Sachs diagnosis after reassuring genetic testing

How a medical error changed the course of their family's life

The emotional tension between medical training and parental instinct

What it means to "do everything" in a non-medical way

How Havi communicated joy, preferences, and personality without words

The role of community and parent-to-parent connection during grief

How the family created meaningful traditions, including weekly "Shabirthdays"

The impact of loss on identity, purpose, and career direction

 
What You'll Learn in This Episode:
What Tay-Sachs disease is and how it affects the body

The limitations—and importance—of genetic screening

Why preventive genetics is one of the most powerful tools in modern medicine

How families can approach decision-making when facing life-limiting diagnoses

The importance of redefining quality of life beyond clinical outcomes

How grief and love can coexist—and shape the way we live

 
Resources Mentioned
E-motion-Non-profit organization created by Myra that supports bereaved mothers

JScreen (Genetic Testing & Education)

57 Fridays (memoir by Myra Sack)

Emory University's JScreen Program

National Tay-Sachs & Allied Diseases Association (NTSAD)

 
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: 
*]:pointer-events-auto R6Vx5W_threadScrollVars scroll-mb-[calc(var(--scroll-root-safe-area-inset-bottom,0px)+var(--thread-response-height))] scroll-mt-(--header-height)" dir="auto" data-turn-id="4739745b-1892-42c2-94c3-50a772e3ff1b" data-testid="conversation-turn-3" data-scroll-anchor="false" data-turn="user"> *]:pointer-events-auto [content-visibility:auto] supports-[content-visibility:auto]:[contain-intrinsic-size:auto_100lvh] R6Vx5W_threadScrollVars scroll-mb-[calc(var(--scroll-root-safe-area-inset-bottom,0px)+var(--thread-response-height))] scroll-mt-[calc(var(--header-height)+min(200px,max(70px,20svh)))]" dir="auto" data-turn-id= "request-WEB:969cb4ab-59dd-4854-b718-920a4b83a8e3-1" data-testid= "conversation-turn-4" data-scroll-anchor="false" data-turn= "assistant"> Tay-Sachs disease, Tay-Sachs awareness, rare disease podcast, pediatric rare disease, genetic disorder, infant Tay-Sachs, neurodegenerative disease, parenting a medically complex child, caregiver support, special needs parenting, navigating rare disease, pediatric neurology, genetic testing, childhood illness, family medical journey, emotional support for families, healthcare podcast, Child Life On Call Podcast, family resilience, living with Tay-Sachs

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
 
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!

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