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A Triumphant End–Regional Hospice and pediatric care

Chelsea Wheeler was a special girl, something goosebumps confirmed as we talked in 2013 about her dream of becoming a chef—both inspiring and heart-wrenching. Chelsea, then ten, was unable to eat, relying on an IV for nutrition as she and her family waited for a life-saving small bowel transplant.

A condition known as pseudo-obstruction had caused irreversible intestinal failure for Chelsea, whose family was raising money for transplant costs when I wrote about her. Complications began immediately after the transplant and ultimately prevailed. Chelsea died in July 2017.

It took the serendipity of meeting another visionary woman, Regional Hospice president and CEO Cynthia Emiry Roy, to reveal my lingering sadness was the wrong emotion for honoring Chelsea, whose obituary declared, “Although her body failed, Chelsea’s soul triumphed.”

Roy and her team at Regional Hospice and Palliative Care in Danbury played a role in that triumph, granting Chelsea a bucket-list wish in 2016 by organizing a “day of glamour” fashion show in which Chelsea “lived out her dream as a red-carpet ingenue.” A photobook documenting the day is a record of living life to the fullest and celebrating the promise and possibility of each new day—reflecting the Regional Hospice philosophy.

Chelsea’s story is also emblematic of a profound need in Connecticut and the U.S. for hospice care for terminally-ill children, who either die in a hospital or at home, where their death can leave an imprint of grief on the family and friends.

Regional Hospice is rising to the challenge with a Building Under the Stars initiative to expand hospice care for children by creating four in-patient rooms on the second floor of the Center for Comfort Care and Healing. Only four other hospice facilities in the country have in-patient facilities for children.

The level of need is profound. Regional Hospice provides services to between ten and 15 children a day, and Roy estimates 300 children within a 50-mile radius of Danbury die from terminal illnesses each year.

Building Under the Stars is a collaboration between Regional Hospice and Roger Ferris + Partners, of Westport, acclaimed for its environmentally-responsive architecture. Like the current 12 rooms on the first floor, the new in-patient rooms for children will feature pull-out couches, tables and chairs, balconies and screened porches with doors wide enough to let the patient’s bed pass through. They’ll also look out over the woods, where new walking paths will accommodate battery powered cars young children can drive through the landscape.

A companion initiative will create an endowment fund to provide respite care for families with children receiving hospice services, something insurance doesn’t cover. The ill children will come to the center so parents and families can get a break. “There’s almost no one in the state doing that,” says Roy.

The name Building Under the Stars references the dramatic feature planned for the children’s rooms in the new North Star pavilion wing, innovative night sky ceilings glowing with a sense of wonder. “A significant part of the tapestry of the heavens, the North Star speaks to infinite possibility, to the wonder and depth of the universe, which is both boundless and timeless,” Regional Hospice says in a release. “To ponder the nighttime sky is to marvel at the complexity and beauty of our true nature.”

Roy, who came to Regional Hospice in 2007 with a vision of building the in-patient center, first had to work with the Connecticut legislators to revise state regulations for in-patient hospices. The Center for Comfort Care and Healing opened in 2015, “providing hospital quality care while looking and feeling more like a luxury hotel,” explains Roy.

Regional Hospice primarily provides services in people’s homes, and offers overlay services for patients at skilled nursing and assisted living facilities, but shines brightest in providing an uplifting end-of-life experience through the in-patient model. “Today, this day, is a good one, and that’s what good hospice care is all about—making the best of every day,” the characters say in one of Regional Hospice’s animated explanatory videos.

“People can come here from anywhere,” says Roy, and they come as much to live as to die.

FRESH AIR // The pediatric rooms will feature balconies and screened porches with doors wide enough to let the beds roll outside.

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