SARAH HOUSE "IN THE NEWS"
The Enquirer - April 23, 2007
Comfort For Dying Children
by John Johnston
Dianne Hater (left) and Kim Marcum-Mercier are trying to build a respite center for children like their daughters.
Sixteen-year-old Sarah Zepernick was dying.
The Colerain High cheerleader wanted to be home as her battle with cancer neared its end in May 1998. But in her fragile condition, the best her family could do was move her out of intensive care at Cincinnati Children's Hospital Medical Center and into a different room, one they had decorated with Sarah's plush bunny, Beatles bed throw and posters.
A nurse ventilated Sarah with a resuscitation bag as they moved through a busy ward, past other young patients and their parents.
"I felt like everybody in that hospital, everybody on that floor, was witnessing this very precious, sacred time with Sarah," says her mother, Kim Marcum-Mercier.
She wishes other things had been different, too. When Sarah was in intensive care, her many friends were relegated to hospital hallways. And in the month before her daughter's death, an exhausted Marcum-Mercier sometimes had to sleep in a vinyl chair in a brightly lit lobby.
A veteran nurse at Cincinnati Children's, Marcum-Mercier, 46, knows that many families face even more trying circumstances when their children suffer from life-threatening conditions. That's why the Colerain Township resident is leading an effort to raise as much as $7 million to build the Midwest's first freestanding respite center for children and young adults.
It would be named Sarah House, for her daughter.
"Families could gather in suites that look more like a home and feel more like a home, and they wouldn't have to see the busyness of a hospital going on around them," says Marcum-Mercier, who is married and has a 23-year-old daughter.
Sarah House would fill gaps in two important aspects of caring for children with life-limiting conditions, its backers say.
The first is end-of-life care, which includes end-of-life care for children and bereavement care for their families. Families currently have two options: their children can die in the hospital or at home.
Cincinnati Children's has a hospice program, StarShine, which provides services to terminally ill children and their families in their homes. But some parents don't want a child to die at home because they can't bear to relive the pain of walking past the child's room each day, or they want to spare their other children that hurt, says Dr. Norb Weidner, StarShine's medical director and an advisory board member of Sarah House.
As for the hospital, "It's not the quietest place," Weidner says. "We do our best to accommodate families and their needs. But it's not a homelike atmosphere."
The second function of Sarah House would be to provide overnight respite care. It would serve families who are caring for medically fragile children 24 hours a day and need a break. Those families likely would account for the bulk of Sarah House's clientele, Weidner and Marcum-Mercier say.
Locally, options for overnight respite care are limited. Children's Hospital rarely has beds available for such care, Weidner says. Ronald McDonald House is a home away from home for children who are receiving medical care and their families, but it does not provide skilled nursing care.
Had a place like Sarah House existed, Dianne Hater, 47, of Delhi Township says her family could have used it for end-of-life care, respite care, or both.
The older of her two daughters, Danielle, was diagnosed with bone cancer when she was 17. She died at age 20 in May 2002. The last six months of her life, Danielle was bedridden at home.
"She required complete care, plus she was dealing with a lot of pain, so there were huge amounts of medication; all of it needed to be administered and organized, which was up to me, so I quit working," says Hater, a former interior designer who now works as a school aide for autistic children.
The emotional and physical demands take their toll, she says.
"And of course there's another child in the house that you try to give attention to. She knew her sister was going to die, and it was hard for us to say, 'Are you OK with having your sister die in the house?' "
Danielle stayed at home and died peacefully in her sleep.
In a place like Sarah House, the staff would have handled nursing duties, "and I could have just spent quality time with her. That would have been huge," Hater says.
Hater is among about a dozen people volunteering time to make Sarah House a reality. She learned of the effort through Marcum-Mercier, who was one of Danielle's StarShine hospice nurses.
Two years ago, Marcum-Mercier and other StarShine staffers read a People magazine story about George Mark Children's House in San Leandro, California, the nation's first freestanding children's hospice and respite center. They agreed Cincinnati, home of one of the top children's hospitals, should have a center, too.
The project is still in its early stages. A business plan must be devised. The non-profit Sarah Zepernick Foundation that Marcum-Mercier created after her daughter's death will spearhead the capital campaign.
A portion of the money raised will be earmarked for an endowment to assist families with costs not covered by insurance, Marcum-Mercier says. Those without coverage would not be turned away, she says.
She envisions Sarah House having eight children's bedrooms and two family suites. The staff would include nurses and social workers trained to deal with end-of-life care. It would be a place for family and friends to gather and say goodbye. A place where a parent could lie in a bed and hold a dying child.
Marcum-Mercier hopes someone will step forward to donate the land. Ideally, she says, Sarah House would be located in a park-like setting, with pathways and gardens so children could experience the outdoors.
"Just to see 'em smile one more time because they got to go outside," she says. "That's worth a million dollars right there."