Please note that this story is about infant loss. Please read with care.
Sean and Shelley were friends for years before they reconnected in 2004, just before Sean left for a tour of duty in Iraq. When they both found themselves back in Denver in 2008, it became clear they were meant to be together. They shared ambitions, values, and a deep love for simply enjoying life side by side. Marriage came naturally—but children weren’t an immediate priority.
Those priorities changed in 2020 when they found out they were expecting a baby boy, who they named Rowan Glenn Endsley.
Shelley’s pregnancy was smooth and uncomplicated at first. Early genetic testing revealed no major concerns, and the couple began preparing to welcome their son—buying clothes, decorating the nursery, and imagining their new life as a family.
But later in the pregnancy doctors noticed a thickening in Rowan’s heart valves. Though the earlier genetic tests had come back clear, this new development raised questions. Still, no one suspected anything life-threatening.
They could never have imagined what was about to come their way.
A Surprise Arrival and a Deep Bond
The day before Rowan’s birth Sean spent the day golfing with friends. When he returned home, Shelley told him something felt different. That night her water broke, and just four hours later, Rowan was born—tiny, beautiful, and perfect in their arms.
“For three days, he was just another NICU baby who arrived early,” Sean shared. “We assumed that his little body just needed to catch up to his big ambition.”
But as Rowan’s care team dug deeper they noticed signs that prompted a full genetic panel. Despite earlier reassurances Sean and Shelley received devastating news: their son had Trisomy 18, a rare and often fatal chromosomal condition.
In Rowan’s case, his biggest issue was his body’s inability to regulate the carbon dioxide levels in his blood. The only way to keep him alive was to keep him on oxygen. If they ever wanted to bring him home, he would have to be able to sustain himself without it. So Sean and Shelley faced an impossible decision: keep him on oxygen forever, or take him off it and either say goodbye or face terrifying new challenges at home.
“We went from praying for him to be healthy to praying that he wouldn’t have to live his life like this.”
Grief, Isolation, and Unexpected Family
Because Rowan was born at the height of the COVID-19 pandemic, Sean and Shelley were isolated. Hospital protocol meant no family could join them. But amidst the loneliness, a new kind of family formed. Their NICU care team, including Dr. Randolph and nurses Olivia and Julie, became their lifeline.
“These people were strangers a week before,” Sean said, “but they quickly became family—the only people we had with us.”
After Rowan fought for ten incredible days with no meaningful sign of improvement, Sean and Shelley decided it was time to remove his oxygen and prepare for whatever came afterwards. The three caregivers they’d become so close to in the NICU were the ones Sean and Shelley asked to be by their side. People they hadn’t known days earlier were now holding space for them during their darkest moment.
That kind of care leaves a mark.
Turning Grief into Action
In the months following Rowan’s passing Sean and Shelley channeled their grief into purpose. On the anniversary of his life, they brought food to the NICU staff at Rocky Mountain Children’s, where Rowan had lived his entire ten days of life. They also began fundraising in his memory and were soon connected with Rocky Mountain Children’s Health Foundation (RMCHF).
“This kind of care is incredible, but it’s not cheap,” Sean said. “We were lucky not to be impacted financially, but we know many families are. And they’re navigating that while grieving at the same time.”
When RMCHF asked what they’d like to do with the funds they had raised, Sean and Shelley considered specialty NICU equipment or dedicating a room in Rowan’s name. But their thoughts kept returning to the caregivers.
They remembered when they learned of Rowan’s diagnosis in a breakroom. They thought about how, after leaving the NICU, they could go home and grieve in peace, while the doctors, nurses, and staff all had to go home and be partners, parents, and people, and then put on their armor and do it all again the next day for another family just like theirs.
That’s when they were introduced to the idea of the Zen Den—a calming, private space for NICU staff to decompress, reflect, and recover after intense shifts.
It was a perfect fit.
Rowan’s Zen Den and Beyond
After three years of fundraising, planning, and collaboration, Rowan’s Zen Den was unveiled at Rocky Mountain Children’s—dedicated to the NICU team who cared for him and countless other families.
But Sean and Shelley knew there was more they could do.
With RMCHF, they launched Rowan’s Fund to expand support for grieving families and the caregivers who walk with them. This fund helps cover:
- Bereavement services
- Funeral and cremation costs
- Grief and loss training for care teams
- Projects like the Zen Den and future spaces for families to receive sensitive news
- A memorial garden to honor the lives of lost children
Honoring Rowan, Continuing the Work
Today, Sean and Shelley continue to share Rowan’s story and honor his life. They now have a daughter, Phoebe, who knows about her big brother and the legacy he inspired. Sean now serves as RMCHF’s board chair, further deepening their commitment to this vital work.
Rowan’s Fund features a hummingbird in its imagery—a deeply personal symbol for the family. On the day Rowan passed, as they sat on their porch in the rare September snow, a hummingbird appeared, hovered near them, and then flew away. It was the only time they ever saw one while living in that house.
They knew it was Rowan.
For families walking a similar path, Sean offers this:
“You can always find some good in a situation when you keep yourself open to seeing it. I’m grateful for Rowan, and I’m grateful for the grief his absence leaves behind. It gives me a way to feel close to my son.”
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Support Rowan’s Fund
To help support families and caregivers through the most difficult moments of their lives, visit rmchildren.org/rowan and learn how you can make a difference.