In this week’s incredibly honest and profound episode, we sit down with Jeff Loving, a husband, proud NICU dad, and the author of Holding Onto the Light: A Father’s Journey Through Loss and Healing. Jeff shares the deeply personal, often unspoken, side of grief: the...
1: A daughter with Goldenhar and Caudal Regression Syndrome- Kelli’s Story
Podcast Show Notes
In the very first episode of the Child Life On Call Podcast, host Katie Taylor speaks with Kelli—a mom whose parenting journey began with a high-risk Mo-Mo twin pregnancy. Kelli walks us through her powerful experience of facing complicated ultrasounds, extensive genetic testing, and ultimately the birth of her daughter Ashlyn, who was diagnosed with Goldenhar Syndrome and Caudal Regression Syndrome.
Kelli’s story is one of resilience, love, and advocacy. She shares what it was like to spend time in the NICU, how she coped with complex medical news, and how she found community and support. From watching her daughter reach milestones once thought impossible—like taking her first steps—to navigating specialty care, Kelli offers wisdom for families on similar journeys.
Key Takeaways from This Episode:
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What it’s like to go through a high-risk Mo-Mo twin pregnancy
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How a NICU stay can impact parents emotionally and logistically
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Insights into Goldenhar Syndrome and Caudal Regression Syndrome
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How milestones—like first steps—can bring joy and validation to families facing uncertainty
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The power of parent-led advocacy and peer support groups
Resources Shared by Kelli:
Helpful Tool for Parents & Providers:
Download the SupportSpot App – A digital resource for on-demand emotional and practical support
Connect with Kelli: @kelita83 on Instagram
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