NICU Stay, Down Syndrome, and Infant Loss: A Grief Journey
Inside the Children's Hospital
Release Date: 10/15/2025
Inside the Children's Hospital
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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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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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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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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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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...
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info_outlineIn this incredibly personal and moving episode, we sit down with Teejay and Jon, the authors of the gentle children's book Clemence, to share the full, raw story of their daughter, Nadiya. Their journey began with an unexpected connection—a transatlantic online romance between Teejay in Australia and Jon in Canada—that quickly turned into a marriage grounded in a shared life and purpose.
With Teejay's extensive background in early childhood development and their experience fostering a young man with Down syndrome, they felt prepared when Nadiya was diagnosed with Trisomy 21 (Down syndrome) early in the pregnancy. However, Nadiya's complications were severe: a complete AVSD (Atrioventricular Septal Defect), a heart condition that made survival a constant battle.
Teejay and Jon open up about the grueling reality of Nadiya’s three-month, extended NICU stay. They speak candidly about the sheer exhaustion, the mental toll of the incessant alarms and machine noise, and the profound isolation of making life-and-death decisions under unimaginable pressure.
We explore the difficult but necessary truth of grieving alongside a partner who processes loss in a completely different way. Jon, an extrovert, sought normalcy and company, while Teejay, an introvert, needed space and quiet isolation. They explain how establishing mutual respect and seeking professional counseling were the key foundations that saved their marriage during this seismic time.
Finally, they share the powerful mission behind their book, Clemence. Written to honor Nadiya's memory, it provides a crucial tool for families, helping them talk to children about baby sibling loss. They reveal plans for a sequel to address the unique grief of the "neglected mourners"—the subsequent children born after a loss who never met their older sibling. This conversation is an essential listen for anyone in the NICU community, processing loss, or seeking resources for pediatric grief support.
Note: We recognize this episode addresses Infant and Pregnancy Loss Awareness. We stand with all families who have experienced loss and hope this conversation brings comfort and community.
Episode Highlights & Timestamps
| Time | Topic |
| 00:05:48 | Nadiya’s Diagnosis: Trisomy 21 and the severe complete AVSD Heart Condition. |
| 00:07:07 | The NICU Reality: Coping with the three-month extended stay and constant medical crisis. |
| 00:11:05 | Profound Kindness: The stranger's DoorDash order that helped them survive the crisis. |
| 00:13:28 | Nadiya's Spirit: Her curiosity, determination, and "badass" personality that charmed the nurses. |
| 00:22:10 | Grief in Marriage: Navigating different coping styles (Introvert vs. Extrovert) to stay together. |
| 00:24:25 | What Helps? The power of presence and what to say (and what NOT to say) to grieving parents. |
| 00:30:46 | A Continuing Legacy: Writing the sequel for Clemence to support subsequent siblings. |
Connect & Resources
Connect with Authors Teejay & Jon:
You can find their children's grief book, Clemence, available on [Amazon, Barnes & Noble, Indigo (Canada), and all major book retailers].
Support & Grief Resources:
For additional support and resources mentioned in the episode, please visit:
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If you found value in this conversation, please check out host Katie Taylor's work and community resources:
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Find community and support with the SupportSpot App (a helpful resource for organizing and receiving support during difficult times): Check it out
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Disclaimer:
The content of this podcast is for informational purposes only. The host and guests are not licensed therapists or medical doctors. Always consult with your child’s qualified medical professional for advice specific to your family’s situation.