Connie Koehler and Terri Weinman know children die. And they do want to talk about it. Koehler is a nurse and Weinman is a neonatologist, and they've seen it firsthand. What they want to talk about is the lack of resources to help the dying child - and the family - through the experience.
They intend to change that in Fort Worth by establishing the state's first in-patient hospice and respite care center for medically fragile children from birth through the teens. There are only three similar programs in the United States. Koehler, the founder, named it Angel Unaware, after the 1953 book by Dale Evans Rogers, wife of cowboy star Roy Rogers, about the death of a daughter from complications of Down syndrome. Koehler first read the book when she was around 10 years old.
It has been a career-long passion for both women. "These children have a right to have the end of their lives in an environment where they will be cared for and their pain will be treated, and they can feel they are in a home environment," says Weinman, the medical director. And their caregivers - generally their parents - deserve some way to have a break from their unrelenting responsibilities.
They have an organization but no home. The plan is to build a freestanding facility, and both women vow that it will be built. Changes in reimbursement and treatment protocols in the Affordable Health Care Act make such facilities more financially feasible now.
Koehler spent most of her nursing career in adult hospice care where there often were calls for hospice care for a child. "We either shied away from it because we didn't feel we were adequately prepared for this child or we took them on and did a really abysmal job of caring for them," she says. The needs, she says, are different from adult patients and require different training. And there is a need to treat the whole family.
"In the small children world, they understand more than you think they do. My experience with children who are dying is that they hide a lot of their feeling from their parents because they feel like they have to take care of their parents," says Weinman.
Koehler and Weinman met by chance - or, they think, by providence. Koehler and her husband, Bill - he's a former provost at TCU and a former president of the Fort Worth ISD School Board - were at dinner when they bumped into Dr. David Turbeville, a Fort Worth neonatologist who is in practice with Weinman. Koehler told him she was trying to found Angel Unaware. "He didn't say another word. He just reached in his pocket and pulled out a business card, flipped it over and wrote "Dr. Terri Weinman" and a phone number on it, and said, "Here's your medical director," " Koehler said.
Both women realize they face a monumental task in raising the money for a freestanding facility, but there is a fallback position.
"We have to get started. We're there. We have to do this," Koehler said. "So I'll go back to what David Turbeville said to me two years ago: "Just go to a strip shopping center and open your doors and do a pediatric home-care hospice." I get it. I think that's OK, but it really does not meet our mission." Ultimately, that requires a freestanding facility. But a strip center may be a place to start.
