Inside the Children's Hospital

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

 
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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.



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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

 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.
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