When families first hear the diagnosis Trisomy 18, also known as Edwards syndrome, they often face a tidal wave of fear, medical uncertainty, and conflicting information. In this powerful SOFT Podcast episode, Jen and Steve Sogge—both parents and physicians—openly share the extraordinary story of their son Dane, who lived four and a half unforgettable years with Trisomy 18.

Their message is clear: every Trisomy 18 journey is unique, every decision is rooted in love, and children like Dane show us what is possible.

🎧 Watch the Episode on YouTube:
https://youtu.be/LKEickFuZ4k

Listen or Watch the Episode on Spotify:
https://open.spotify.com/episode/6rvMrtoYb79FW97fDZdNo8?si=ad9QNRV-S9C1NvYzxsd3BQ

Meet the Sogge Family: Parents, Physicians, Advocates, and a Mighty Son Named Dane

Jen and Steve are not only SOFT board members and medical professionals—they’re parents whose world changed when their youngest son, Dane Thor, entered their lives in 2017.

Dane, affectionately known as “The Mighty Dane Thor,” was born with Trisomy 18 (Edwards syndrome). In this episode, the Sogges share candid insights about:

receiving a prenatal diagnosis
navigating mixed messages within the medical system
advocating for care
honoring Dane’s abilities, personality, and voice
and what it meant to let their son guide every major decision

Their conversation offers rare depth—from medical expertise to lived experience—making this episode essential listening for families, clinicians, and advocates seeking to understand the evolving landscape of Trisomy 18 support and care.

The Early Diagnosis: Unexpected Findings and a Life-Changing Call

At their 20-week ultrasound, the Sogges learned that their baby had several markers raising concern for Trisomy 18. As physicians, they understood the clinical language, but nothing could prepare them for the emotional weight.

Soon, non-invasive prenatal testing confirmed the diagnosis.

But one conversation shifted the narrative: a close friend—also a geneticist—reminded them that many children with Trisomy 18 live longer than previously assumed, and that the medical landscape around Edwards syndrome was changing. She described school-aged children with Trisomy 18 and Trisomy 13 in her practice.

This hope, grounded in data and experience, shaped everything that followed.

Letting Dane Lead: Their Family’s Philosophy of Care

From birth onward, the Sogges committed to one guiding principle:

“Dane will tell us what he needs. We follow him.”

This philosophy echoed through every choice—from birth planning to NICU care to exploring cardiac and pulmonary interventions.

They:

met with neonatology before delivery
created a birth plan reflecting their goals and Dane’s needs
insisted on shared decision-making with the medical team
pushed back when something didn’t align with their values or with Dane’s cues

As Steve reflects in the episode:

“Healthcare should be a team. Parents are part of that team. If something doesn’t feel right, you push.”

This message is increasingly important as more hospitals develop Trisomy 18 care pathways and move away from outdated “incompatible with life” language toward individualized, family-centered care.

A Moment of Crisis—And a Decision That Changed Everything

One of the most emotional parts of the episode comes when Jen recounts the night they believed Dane was taking his last breaths, just shy of his first birthday.

He had survived multiple viral infections, including RSV, and had developed serious heart rhythm issues. He was placed on hospice. The family gathered, held him, and prepared to say goodbye.

Then something changed.

Dane took a breath—and another—and another.

“He was telling us earlier, ‘I think it’s my time to go’… and then suddenly, ‘No, I’m not done yet.’”

That night, they removed him from hospice, restarted his heart medication, and followed his lead into what became three more incredible years.

Living Fully: Hockey Games, Beaches, Travel, Roller Coasters, and Everyday Joy

Despite medical complexities—including oxygen, a trach, and a feeding tube—the Sogges refused to let Trisomy 18 define the limits of their son’s life.

Dane:

traveled to at least seven U.S. states
attended Vegas Golden Knights hockey games
giggled through beach days and family road trips
rode a roller coaster at Disney World
was buried up to his armpits in the sand at just a few weeks old
delighted in pulling his sister’s glasses and playing with his dad’s beard
lit up every room with his huge smile

As Jen says:

“We just treated him as part of the family—because he was. We didn’t want to limit his life or ours.”

Their story challenges outdated assumptions about Edwards syndrome and reframes what it can look like to live fully, joyfully, and meaningfully with Trisomy 18.

The Legacy of the Mighty Dane Thor

Though Dane passed in 2021, his presence remains woven into their daily lives.

The family continues to honor him through:

a Thor’s hammer necklace containing some of his ashes
a small Thor figurine they bring on trips and include in photos
a stocking and yearly ornament for him at Christmas
birthday celebrations and remembrance rituals
daily conversation: talking about what Dane would have loved, and how he shaped them

Dane’s legacy also extends beyond their home. His photo appears in the American Academy of Pediatrics (AAP) Clinical Report on Trisomy 18 and Trisomy 13, symbolizing the shift toward more nuanced, hopeful, and evidence-based Trisomy narratives.

As Steve notes:

“You don’t know how strong you are until you go through hard things. Dane changed all of us.”

Changing the Trisomy Narrative—Through Story and Support

The Sogges are not only sharing Dane’s story; they are actively helping to change the Trisomy 18 narrative.

As SOFT leaders and medical professionals, they have contributed to:

New & Expectant Parent Books for Trisomy 18 and Trisomy 13
birth plan guidance and clinical communication tools
medical board discussions and conference sessions
support pathways for families seeking balanced, real-world information

Their work reflects SOFT’s mission:

No family should face a Trisomy diagnosis alone, and no child’s possibilities should be underestimated.

Watch the Full Episode

This conversation is heartfelt, medically insightful, and profoundly hopeful.
Whether you are a parent, clinician, or advocate, it will deepen your understanding of Trisomy 18, Edwards syndrome, and Trisomy 18 family support.

🎥 Watch on YouTube:
https://youtu.be/LKEickFuZ4k

(Audio podcast link will be added here once available.)