The Middletown Press (Middletown, CT)
Danbury’s Regional Hospice first for children in Northeast
DANBURY — When Cynthia Roy’s best friend died in high school, there was nowhere for her to turn for support.
“It was really an isolating experience,” Roy said.
Losing her friend led Roy to realize what kind of resources dying children and their families need. Now, the president and CEO of Regional Hospice in Danbury, aims to create a space that can provide that kind of care.
Regional Hospice is raising money to create a dedicated center for dying children within its building on Milestone Road.
The center will be the only dedicated hospice space for children in the northeast and only one of five in the nation.
Close to 360 area children under 17 died each year from terminal diseases, Regional Hospice estimates.
“This allows them to have a space to spend their last days,” Roy said. “It’s really beautiful.”
The center will be called the North Star, with the ceilings in each of the bedrooms decorated with stars.
“The North Star is the guiding star,” Roy said. “It shows us where we need to go, and kids can have imagination about what the future is for them. They’re allowed to have some hope.”
The goal is to start construction in the spring of 2020 and finish nine months later.
Regional Hospice has raised $1 million for the space so far, but aims to garner another $15 million. Of that, $6 million would go to construction, while the rest would go toward providing free respite care to families.
There are so few dedicated children’s hospices in the country in part because they are so expensive to run and need to raise money for respite care, which insurance generally does not cover, Roy said.
But parents desperately need breaks from being fulltime caregivers and often cannot find someone to look after their children, she said.
“You really have to be comfortable with making sure the people around you can handle the needs of your child and that’s very unusual,” Roy said. “Most people don’t have that or can’t find that, so to able to have a place where you can leave a child for respite is invaluable.”
The center also gives families an option to bring their children before their passing.
“They can always remember their child living in the house and the death isn’t there,” Roy said.
The plan is to create four singleoccupancy suites, with private balconies and space for families to stay. A second playground would be built, while a pathway would be created in the woods for children to ride
carts on. The walls on the rooms would have a special type of foam for children to decorate, while kids’ artwork will hang in the hall
way.
“The idea (is) of designing a space with what a child would want to see and feel at the end of life,” said Jen Matlack, spokeswoman for Regional Hospice.
Rooms will have doorbells, so children can invite
or decline visitors.
“Kids should have a choice in their own care,” Roy said. “They have so little control over what’s happening to them. This gives them some element of control over what they want and need to make themselves feel better.”
The center would go on the second floor of the facility, giving patients access to the spa, nondenominational chapel, library and other resources downstairs. Bereavement programs for grieving children are offered downstairs.
Regional Hospice serves about 1,200 patients a year from Fairfield, Litchfield, New Haven and Hartford counties. The organization has supported patients in the community since 1983 and built its facility with 12 suites in 2015.
Roy led efforts to update what she called “antiquated” regulations for hospice facilities before constructing the building. Now, any hospice built in the state must have private suites and meet certain patienttostaff ratios, among other rules, she said.
Regional Hospice is set up to look more like a hotel than a hospital
“Hospitals are good places, but we don’t think of them as good places to die,” Matlack said.
The Danbury facility is one of the only hospices in the state that cares for children and the only hospice in the state supports babies. Only 10 percent of the 4,500 hospice centers in the country care for children, according to New York Times Magazine.
“Connecticut is really an underserved state, and really all the states around us are underserved in terms of pediatric endoflife services,” Roy said.
Unlike most states, Connecticut allows children with terminal illnesses to access hospice care even while they are receiving treatment, Roy said. This means children are often served through Regional Hospice for more than two years, she said.
“We come to know them and really have a relationship with them,” she said.
One child, 10yearold Coryn, was at hospice for nearly two months while she battled terminal brain cancer. Her story was the inspiration for a book, “Emily’s Last Wish,” the organization created to share why it is important to have a children’s unit.
Roy hopes the center will be a place children can run, play and live fully.
“Hospice is not about dying,” she said. “It’s about living.”