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To say that Jeannine Winsness, NP, has heart for children is an understatement. She was a foster parent for 11 children over the course of a dozen years, many of whom had health problems related to maternal drug and alcohol abuse. She has 15 years of experience as a nurse specializing in the care of children and their families. And her most recent endeavor for children, planned for the last 8 years, finally came to fruition Feb. 28: the opening of Exceptional Care for Children, a pediatric center for skilled nursing, palliative and end-of-life care in Newark, Del.

"This is only the second facility in the United States specifically designed to care for dying children," Winsness told ADVANCE. (The other such center is in California.) "I've seen a lot of children living for prolonged periods of time in hospitals with nowhere to go and some dying in very undignified ways. Exceptional Care meets a need by functioning like a pediatric intensive care unit, yet looking and feeling like home."

As board president and CEO of Exceptional Care for Children, Winsness planned the center with 20 patient beds and nine family suites. Patients are separated based on age, not diagnosis or prognosis. Contributing to the soothing home-like feel is the setting: nearly 8 acres of land with a pond, a gazebo and wooded walking trails. Upcoming additions and improvements include a pool, a spa, a gymnasium, a greenhouse, a sanctuary and a library.

While it was a labor of love, the planning stages for changing the way an entire population of children is cared for was not easy. Winsness worked on the project for about 5 years in Pennsylvania but was not able to make it happen there.

"Bringing the facility to fruition has totally consumed me. I had no idea what I was getting myself into," she said. "I never imagined it would be so difficult to raise money for a special nonprofit project like this. We are still only about 30% to our goal. However, the state of Delaware has been exceedingly generous in providing operating grant money to get us through the first 18 months or so, and there have been significant contributions from several Delaware foundations."

Although Winsess saw the uniqueness of this facility as being a selling point for donors, it was at times its downfall.

"Intuitively, one would think it would be easy to 'sell' the concept because it isn't a duplication of any existing services. However, because [of that fact], many potential donors say, 'if it is so needed, why hasn't someone else done this long before Exceptional Care?'" she said. "In some of my darkest moments, I am inspired by the Wright Brothers on the dunes of Kitty Hawk trying to get the first plane off the ground."

Winsness acknowledges that huge strides still need to be made to improve the way care is provided to children at the end of life. However, Exceptional Care for Children was created with the hope that it can serve as a demonstration model to be replicated all over the country, she said.

"I have been relentless in my pursuit of this goal, and I have protected that vision like a mother goose protects her goslings," Winsness explained. "That relentless quality has gotten on some people's nerves from time to time, but it was what needed to be done. Nurse practitioners need to be willing to take up the cause of new and innovative concepts that will solve existing problems. We have the power to affect real and lasting change, if only we believe we can do it!"

Donations can be made at www.exceptionalcare.org.




     

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