NICU Stay, Down Syndrome, and Infant Loss: A Grief Journey

In 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

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:

• Canuck Place Children's Hospice 

• Kids Grief Support (Jessica Correnti) 

Support the Host & Show

If you found value in this conversation, please check out host Katie Taylor's work and community resources:

• Join Katie Taylor's Substack for in-depth insights and articles: Join here

• Find community and support with the SupportSpot App (a helpful resource for organizing and receiving support during difficult times): Check it out

• Listen & Subscribe! 

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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.