MERRF Syndrome and Motherhood: Raising and Remembering Dahlia - Jessica’s Story (248)
Inside the Children's Hospital
Release Date: 04/02/2025
Trisomy 13: Challenging the Narrative and Choosing Hope
Inside the Children's Hospital
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...
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NICU, Trach and Home Care: One Family's Journey to Stability
Inside the Children's Hospital
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...
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Meningitis in Children: When a Mother's Instinct Led to Life-Saving Answers
Inside the Children's Hospital
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...
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When a Parent Has Cancer: What Kids Understand Before We Say It
Inside the Children's Hospital
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 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...
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Spinal Muscular Atrophy (SMA): A Parent’s Journey from First Signs to Diagnosis
Inside the Children's Hospital
What happens when your instincts tell you something is wrong—but you’re dismissed again and again? For many parents, the journey to a diagnosis begins with a gut feeling—and the courage to persist in seeking answers. This week, Katie sits down with Nikki McIntosh, author and advocate, to share the story of her son Miles, who was diagnosed with spinal muscular atrophy (SMA) at just 18 months old. After noticing delays in his ability to stand and bear weight, Nikki followed her instincts despite initial dismissal—ultimately leading to a life-changing diagnosis. Nikki shares what those...
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HIE at Birth: A Dad’s Story of Brain Injury, NICU Trauma, and Finding Purpose
Inside the Children's Hospital
Within minutes of arriving at the hospital, Brady and his wife were told their newborn daughter had suffered a severe brain injury. In this episode of Inside the Children's Hospital, Katie sits down with Brady Crandall, founder of Youth Crews, to share his family’s journey following a diagnosis of hypoxic ischemic encephalopathy (HIE). What began as a routine pregnancy quickly turned into an emergency delivery, NICU stay, and a new reality as parents of a medically complex child. Brady opens up about: The shock and uncertainty of those early days Navigating life as a “medical dad.” The...
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Preparing Your Child for Surgery: A Pediatric ENT Surgeon’s Honest Advice
Inside the Children's Hospital
How do you prepare a child for surgery and build trust with their medical team? This episode explores how families and healthcare providers can work together to support children through procedures like tonsillectomy and other medical challenges. This week’s guest, Dr. Tali Lando, shares her perspective as a pediatric ENT surgeon, author, and mom of three teenage daughters. She and Katie discuss what it’s really like for families navigating medical care with complex kids and how parents can advocate effectively while still building strong partnerships with their child’s care team. If...
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Life After Pediatric Kidney Transplant: A Mom’s Journey Through Dialysis, Surgery, and Recovery
Inside the Children's Hospital
What does life really look like after a child receives a kidney transplant? Many people think transplant is the end of the journey—but for families, it’s often just the beginning. This week’s guest, Lyndsey Fedorko, returns to the podcast to share the next chapter of her son James’s medical journey—life after a kidney transplant. After years of dialysis, hospitalizations, and uncertainty, James received a life-saving kidney transplant from his aunt, marking the beginning of a new season for their family. Lyndsey and Katie reflect on the intense months surrounding transplant surgery,...
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Healing After the NICU: Processing Trauma, Loss, and Your Family's Story
Inside the Children's Hospital
This week’s guests, perinatal mental health therapists Emily Souder and Mahaley Patel, share the story behind their book Your NICU Story: Reflecting on Your Family’s Experience—a guided journal created to help families process the emotional impact of a NICU stay. Mahaley also opens up about her daughter, Sachi, who died after a NICU stay, and how storytelling and narrative healing became a lifeline in her grief. She and Emily talk with Katie about why so many NICU parents carry trauma long after discharge and how writing your story can help families reconnect with what they experienced....
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Trust, Grief, and Loving Your Child Through Big Identity Changes
Inside the Children's Hospital
What happens when your child shares something that shifts the future you thought you understood? In this episode of Inside the Children’s Hospital, Katie sits down with Kelly Kemp — certified child life specialist of more than 30 years and mom of three — to talk about navigating trust, grief, advocacy, and love after her child was diagnosed with gender dysphoria and came out as transgender. Kelly shares: The phone call that changed everything Navigating substance use and mental health concerns Grieving privately while choosing love publicly Rebuilding trust with her...
info_outline"We followed Dahlia’s lead—and Dahlia was not going to let this stop her.” — Jessica Fein
What happens when your child’s diagnosis is so rare that no one—including your doctors—knows how to help? For Jessica Fein, navigating life with her daughter Dahlia’s MERRF Syndrome meant redefining motherhood, finding joy in unexpected places, and transforming grief into connection and advocacy.
In this honest and deeply moving episode, we explore:
✅ What it’s like to go on a diagnostic odyssey, and finally get answers that bring more questions
✅ The complexity of parenting a child with medical needs, including the realities of home care and hospital stays
✅ How grief exists even while your child is alive—and what ambiguous grief means for medical parents
✅ The power of storytelling, finding meaning through writing, and connecting with community through shared experience
Whether you’re a parent, provider, or someone looking to better understand the emotional layers of complex care and rare disease, this episode will resonate with you.
Timestamps & Key Topics
⏱️ [00:00] – Episode Intro
Meet Jessica Fein and hear the quote that shaped this conversation
⏱️ [01:00] – Jessica’s Story Begins
Navigating the early years of parenting without answers
⏱️ [03:00] – Diagnosis & the Unknown
The journey to a MERRF Syndrome diagnosis and what came next
⏱️ [09:00] – Life With a Rare Disease
Hospital stays, trachs, and becoming the expert in your child’s care
⏱️ [13:00] – Following Dahlia’s Lead
Letting joy and silliness guide the way
⏱️ [17:00] – Who Dahlia Was
A peek into Dahlia’s personality and how she impacted everyone she met
⏱️ [20:00] – Writing As Healing
How Jessica turned to writing as an act of reflection, advocacy, and self-care
⏱️ [24:00] – What Helps in the Hospital
Tangible ways friends and providers can support caregivers
⏱️ [30:00] – Grief, Then and Now
Understanding ambiguous grief—and the evolution of loss after death
⏱️ [33:00] – How to Connect With Jessica
Where to find her book, podcast, and writing
Resources & Links from today's episode:
📕 Read Breathtaking by Jessica Fein: [Available on Amazon and wherever books are sold]
🌐 Visit Jessica’s website: www.jessicafeinstories.com
🎧 Listen to her podcast: I Don’t Know How You Do It
📷 Follow Jessica Fein on Instagram, Facebook and LinkedIn
Share Your Thoughts
Did this episode resonate with you? Do you have a story of parenting through rare disease or complex medical care? We’d love to hear from you—tag us or leave a comment! If you found this episode meaningful, please subscribe and leave a review—it helps more families discover these conversations.
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🎙️ Meet the Host
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform connecting families and care teams with expert child life services. A certified child life specialist for over 13 years, Katie has worked across pediatric healthcare settings, presented nationally, and is the author of a children’s book. She hosts the Child Life On Call Podcast to amplify parent voices and emphasize the value of child life services.
📱 Instagram.com/childlifeoncall
📘 Facebook.com/childlifeoncall
🔗 linkedin.com/in/kfdonovan
The Child Life On Call 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.
Keywords: MERRF Syndrome, Rare Disease, Medical Parenting, Grief, Child Life