Inside the Children's Hospital

What do you do when your child receives a diagnosis and your mind suddenly goes blank?
Whether you're hearing difficult news for the first time or preparing your child for a medical procedure, knowing what to ask—and how to support your child—can feel overwhelming.
In this episode of Inside the Children's Hospital, Katie Taylor, Certified Child Life Specialist, is joined by Dr. Mona Amin, board-certified pediatrician, founder of PedsDocTalk, and Chief Medical Officer at Poppins, for an honest conversation about helping families navigate some of the hardest moments in healthcare.
Together, they share practical strategies for asking the right questions after a diagnosis, preparing children for medical procedures in developmentally appropriate ways, and supporting both parents and children through fear, uncertainty, and overwhelming emotions. Dr. Mona also shares her own experience as both a pediatrician and the mother of a child who experienced a neonatal stroke, offering a unique perspective from both sides of the hospital bed.
Whether your child is facing a new diagnosis, an upcoming surgery, blood work, vaccinations, or ongoing medical care, this episode will leave you feeling more prepared, informed, and empowered.
In This Episode:
00:00 – Why difficult medical conversations can leave parents feeling overwhelmed
2:12 – Meet Dr. Mona Amin and her work supporting families through PedsDocTalk and Poppins
5:02 – How virtual pediatric care is helping families access support sooner
6:53 – What parents should ask after receiving a new diagnosis
8:16 – Why your brain "goes offline" during difficult news
13:42 – How to pause, regulate emotions, and advocate for your child
18:31 – Should parents Google a diagnosis? How to find trustworthy information
23:15 – The importance of hope while navigating uncertainty
31:21 – How children understand illness differently at every developmental stage
35:57 – Preparing toddlers and preschoolers for medical experiences
39:38 – Supporting school-age children through needles, procedures, and fear of pain
42:38 – Why you should never use the doctor as a threat
44:00 – Preparing children for blood draws, MRIs, vaccines, and procedures
46:23 – What to do when your child is completely dysregulated during a medical procedure
52:18 – Comfort positioning, honest communication, and building trust with children
56:07 – Helping children express big feelings while remaining their safe place
You'll Learn:
The most important questions to ask after a new diagnosis

How to stay grounded when emotions take over

Developmentally appropriate ways to explain illness to children

How to prepare kids for medical procedures without increasing anxiety

Why honest language builds trust with children

How to respond when your child is scared or dysregulated

Why connection matters more than perfection

Ways to help children develop confidence during medical experiences

Resources Mentioned
PedsDocTalk by Dr. Mona Amin

Poppins Pediatric Care (Use code ChildLifeOnCall for one month of FREE parent coaching or pediatric medical care where available.)

Free Comfort Position Guide from Child Life On Call

 
 
Connect with Us
Instagram: @childlifeoncall + @insidethechildrenshospital

YouTube- All episodes available in video format! 
Subscribe: Never miss an episode on Apple Podcasts or Spotify.

Visit insidethechildrenshospital.com to search stories and episodes easily

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: child medical diagnosis, pediatric diagnosis, child life specialist, Dr. Mona Amin, PedsDocTalk, preparing kids for medical procedures, talking to kids about illness, helping children cope with illness, questions to ask after a diagnosis, child receives a diagnosis, pediatrician advice, preparing kids for blood draws, preparing kids for vaccines, hospital anxiety in children, pediatric healthcare, family-centered care, medical parenting, supporting children through healthcare, pediatric patient education, parenting a medically complex child

When your child receives a diagnosis, everything changes. In this heartfelt episode, Katie Taylor welcomes back Jessica Patay, founder of We Are Brave Together, to discuss the emotional realities of caregiving, raising a son with Prader-Willi syndrome and autism, and why supporting the mental health of caregiving moms is essential.
Jessica shares how a mentor mom transformed her own journey after her son's diagnosis and how that experience inspired her to create We Are Brave Together, a thriving community supporting thousands of caregiving mothers worldwide. She also introduces her newest book, Suddenly Brave Together, a collection of letters written by experienced caregiving moms to families navigating a new diagnosis.
Together, Katie and Jessica explore the importance of community, finding hope through shared experiences, navigating the transition into adult healthcare, and why caregivers deserve just as much support as the children they care for.
Whether you're parenting a child with a rare disease, disability, medical complexity, neurodivergence, or chronic illness, this conversation is a reminder that you never have to walk this journey alone.
In This Episode:
1:58 – Meet Jessica Patay and her family's journey with Prader-Willi syndrome
5:45 – What is We Are Brave Together?
8:10 – Jessica's new book, Suddenly Brave Together
11:05 – The letter Jessica wrote to newly diagnosed moms
13:10 – Why caregiver mental health matters
15:55 – The mentor mom who changed everything
17:15 – How moms can become Connection Circle leaders
21:30 – Supporting moms navigating behavioral challenges
23:15 – Where to find Jessica's books and resources
24:15 – Transitioning from pediatric to adult healthcare
27:45 – Why caregivers still need a village after childhood
30:45 – Creating spaces where caregivers feel seen, not judged
32:45 – Why supporting moms strengthens the entire family
Resources Mentioned
• We Are Brave Together: https://www.wearebravetogether.org
• Learn about Connection Circles and caregiver retreats
• Suddenly Brave Together and Becoming Brave Together
Connect with Us
Instagram: @childlifeoncall + @insidethechildrenshospital

Subscribe: Never miss an episode on Apple Podcasts or Spotify.

Visit insidethechildrenshospital.com to search stories and episodes easily

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: 
*]: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-6a5fe19e-5ae8-83ea-b880-f45b98367efe-1" data-turn-id-container= "request-6a5fe19e-5ae8-83ea-b880-f45b98367efe-1" data-testid= "conversation-turn-8" data-turn="assistant"> Prader-Willi syndrome, We Are Brave Together, caregiver mental health, caregiving moms, special needs parenting, medically complex children, rare disease parenting, autism parenting, caregiver support, parent support community, new diagnosis support, disability parenting, family caregiving, pediatric to adult healthcare transition, Connection Circles, caregiver burnout, parenting after diagnosis, medically complex parenting, Jessica Patay, caregiving community

What does it take to help children thrive during a hospital stay?
In this episode of Inside the Children's Hospital Podcast, Katie Taylor sits down with Alyssa Sachs, CCLS, an inpatient Child Life Specialist at Boston Children's Hospital, to explore how Child Life Specialists help children and families experience joy, connection, and normalcy—even during long and complex hospital stays.
Alyssa shares what it's like supporting children on the inpatient neuroscience floor, where patients range from newborns to young adults with epilepsy, neuro-oncology diagnoses, neurosurgical needs, and more. She offers an inside look at the innovative programs that make Boston Children's unique, including gaming and technology specialists, hospital clowns, music therapy, artists-in-residence, facility dogs, and therapeutic events that transform the hospital experience.
Throughout the conversation, Alyssa reminds us that it's often the smallest moments, like a surprise snow cone, a movie night on the rooftop, or decorating a hospital room, that leave the biggest impact on children and caregivers alike.
Whether you're a parent navigating a hospitalization, a healthcare professional, or simply curious about how Child Life Specialists support patients in pediatric hospitals, this episode is a heartfelt reminder that childhood doesn't have to stop because of illness.
In This Episode, We Discuss:
What an inpatient Child Life Specialist does

Supporting children with neurological and neurosurgical conditions

How Child Life Specialists normalize the hospital experience

Gaming and technology specialists and therapeutic gaming

Hospital clowns, music therapy, artists, and facility dogs

Why playrooms matter for patients and siblings

Creative ways families can bring "home" into the hospital

Supporting caregivers through joyful moments

Collaboration between Child Life and the medical team

The importance of community partnerships and hospital donors

Episode Timestamps
00:00 Meet Alyssa Sachs, CCLS at Boston Children's Hospital
01:04 Why Alyssa became a Child Life Specialist
01:49 Caring for patients on the neuroscience floor
03:55 Programs that make the hospital feel like childhood
07:14 Inside the Gaming & Technology Specialist program
09:33 Bringing the outside world into the hospital
11:21 Why joyful moments matter for caregivers too
12:55 Supporting families through difficult hospital experiences
15:56 Simple ways families can create normalcy in any hospital room
18:51 How Child Life collaborates with nurses and physicians
20:55 Joy carts, lemonade stands, and surprise snow cones
23:08 Why hospital playrooms are so important
25:09 The role of hospital clowns in pediatric care
27:06 Why normalization is essential to healing
27:56 Community partnerships that make it all possible
 
Resources Mentioned
Boston Children's Hospital Child Life Services

Hospital Playrooms

Gaming & Technology Specialists

Music Therapy

Artists-in-Residence

Hospital Clowns

Facility Dog & Paw Prints Programs

Connect with Us
Instagram: @childlifeoncall + @insidethechildrenshospital

Subscribe: Never miss an episode on Apple Podcasts or Spotify.

Visit insidethechildrenshospital.com to search stories and episodes easily

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: child life specialist, pediatric neurology, neuro child life, pediatric epilepsy, seizures in children, MRI preparation, EEG preparation, pediatric neurosurgery, medical play, hospital coping skills, pediatric healthcare, family centered care, neurological conditions, brain disorders, hospital anxiety, medical anxiety, coping skills for kids, medically complex children, parent support, children's hospital, child life, epilepsy support, pediatric podcast, Inside the Children's Hospital Podcast, Alyssa Sachs

When Caitlin noticed that her daughter, Kennedy, wasn't meeting developmental milestones, she trusted her instincts—even when others reassured her that everything was fine.
As both a former Child Life Specialist and mom of a child with ADNP syndrome, Caitlin shares her family's journey from early concerns and endless appointments to receiving a diagnosis for a condition so rare that only about 500 cases have been identified worldwide.
In this conversation, Caitlin opens up about navigating uncertainty, advocating for her daughter in healthcare settings, finding support through rare disease communities, and balancing the joy and grief that often coexist when parenting a child with complex medical needs.
Whether you're a parent searching for answers, raising a child with a diagnosis, or supporting families through difficult seasons, Caitlin's story is filled with practical wisdom, encouragement, and hope.
In this episode, you'll learn:
• How to trust your instincts when something feels different about your child's development
• What it was like receiving a rare disease diagnosis
• Why finding the right medical providers matters
• How parents can confidently advocate for their children during medical procedures
• The importance of community for rare disease families
• How Caitlin and her husband navigate the emotional challenges of parenting together
• Why joy and grief can exist at the same time
Timestamps:
00:00 – Introduction 00:41 – Meet Caitlin 02:48 – Early developmental concerns 05:27 – The search for answers 07:24 – Receiving an ADNP syndrome diagnosis 10:05 – What is ADNP syndrome? 11:10 – Coping with the diagnosis 12:50 – Supporting your marriage through caregiving 14:50 – Advocating for your child in healthcare 15:27 – Preparing for medical procedures 17:52 – Parents are part of the care team 21:07 – Family planning after a rare diagnosis 24:09 – Welcoming a second child 27:16 – Joy and grief can coexist 29:20 – Caitlin's favorite part of being Kennedy's mom 30:59 – Resources for rare disease families 32:52 – Different Together Co. 34:35 – Hope, resilience, and final advice
 
Resources Mentioned:
• National Organization for Rare Disorders (NORD): https://rarediseases.org
• Different Together Co. (Caitlin's Instagram)
Connect with Us
Instagram: @childlifeoncall + @insidethechildrenshospital

Subscribe: Never miss an episode on Apple Podcasts or Spotify.

Visit insidethechildrenshospital.com to search stories and episodes easily

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:
ADNP syndrome, ADNP Syndrome diagnosis, rare disease, rare genetic disorder, rare disease awareness, developmental delays, child development, developmental milestones, autism, autism spectrum disorder, hypotonia, genetic testing, pediatric neurology, medical parenting, parenting a medically complex child, special needs parenting, child life specialist, child life, patient advocacy, parent advocacy, healthcare advocacy, medical procedures, hospital coping, pediatric healthcare, VCUG, medical trauma, parenting after diagnosis, genetic counseling, early intervention, physical therapy, rare disease community, disability inclusion, family support, caregiver support, chronic illness parenting, special needs family, navigating a rare diagnosis, trusting your instincts, medical journey, pediatric diagnosis

For many families navigating chronic illness, it's hard to imagine what the future might look like for their child.
This week on Inside the Children's Hospital, Katie Taylor sits down with Vincent Rosche, a patient advocate, fitness enthusiast, and survivor who has spent most of his life navigating complex medical challenges. Diagnosed with chronic intestinal pseudo-obstruction (CIPO) at just 9 months old, Vincent grew up with feeding tubes, central lines, frequent hospitalizations, and even battled thyroid cancer as a teenager.
Today, Vincent works as the Community Engagement Coordinator for the Oley Foundation, connecting patients and families receiving home nutrition support with resources, education, and peer support.
In this inspiring conversation, Vincent shares:
• His earliest memories of growing up in the hospital
• The profound impact Child Life Specialists and therapy dogs had on his experience
• What his parents did that made the biggest difference during difficult times
• Navigating school while managing complex medical needs
• Learning to advocate for himself as a patient
• How fitness transformed his health and confidence
• Becoming a bodybuilding competitor despite lifelong health challenges
• The importance of community, connection, and peer support
• Resources available through the Oley Foundation for pediatric and adult patients
⏰ Timestamps
00:00 Introduction
00:50 Vincent's diagnosis and medical journey
02:52 Life today: advocacy, fitness, and dogs
04:02 Therapy dogs and Child Life memories
05:43 Earliest hospital experiences
07:14 The role of family and support
10:21 Advice for parents navigating chronic illness
17:34 School and growing up medically complex
23:24 Learning self-advocacy
28:20 Discovering fitness
32:59 Becoming a personal trainer
36:15 Competitive bodybuilding
37:59 Joining the Oley Foundation
40:23 Peer support and patient advocacy
45:12 Resources for families
49:49 How to connect with Vincent
51:05 Lessons learned and proudest accomplishments
58:47 A message of hope for parents
01:00:00 Closing
Vincent offers a powerful message to parents who are in the thick of it right now: you're doing better than you think, and your child remembers your love more than your mistakes.
Whether you're a parent, caregiver, healthcare professional, or someone living with a chronic condition, this conversation is filled with hope, perspective, and practical wisdom.
Learn more about the Oley Foundation at https://oley.org
Connect with Vincent:
Instagram: @chronically_fit_life
Facebook: Vincent Rosche
Connect with us!
Instagram: @childlifeoncall + @insidethechildrenshospital

Subscribe: Never miss an episode on Apple Podcasts or Spotify.

Visit insidethechildrenshospital.com to search stories and episodes easily

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: 
Chronic Illness, Rare Disease, Patient Advocacy, Medical Parenting, Pediatric Healthcare, Feeding Tube, TPN, Chronic Intestinal Pseudo-Obstruction, Child Life Specialist, Resilience