'Place of Hope and Healing' Gets New Wing
By Carla Garnett
On the Front Page...
Photos by Ernie Branson
Hoping never again to have to say "there's no room at the inn," officials at the Children's Inn at NIH broke ground on Apr. 24 for an addition to the enormously successful 12-year-old temporary residence for families of children undergoing treatment at the Clinical Center.
"Fourteen years ago when many of you were here for the first groundbreaking, you did so with high hopes," recalled John Taylor, executive vice president of the Merck Co. Foundation, which pledged $3.7 million to build the new two-level wing. The recent donation brings Merck's total contribution to more than $9 million for the inn's construction and maintenance over the past decade and a half.
Inn president Dr. Lori Wiener
"You dreamed that this unique public-private partnership was going to work well and that the Children's Inn would be a comfortable place that would provide a refuge to the children and to their families while they underwent therapy at NIH," he continued. "I would guess that you all felt it was a good place, one that would support these courageous children and their families. But you didn't know how good it would be. Nobody could have known just how good it would be. Now after 12 years, we have that answer. Not only has the Children's Inn proved to be a good concept, but it has proven from day one to be a terrific place by all counts."
While the groundbreaking offered an opportunity to bask in the inn's unqualified success, it also was a time to reflect on the early years when the need for such a place was definite, but the wherewithal to make it happen was not as certain. Dr. Lori Wiener, inn president and coordinator of NCI's Pediatric HIV Psychosocial Support Program, who was in on the project from the ground up, took the audience on a brief verbal tour of the facility's infancy.
In the early 1980s, she said, the concept of a sanctuary for seriously ill children and their families was only that a really good idea by people like Dr. Philip Pizzo, then chief of NCI's Pediatric Branch. By the mid-1980s, after a lot of finagling and planning, NIH had set aside 2 acres of land, Merck had donated $3.7 million to build, several congressional spouses had formed the Friends of the Children's Inn and raised $2 million for furnishings, architect Bob Greenberg had designed the building, and Washington area builder and philanthropist Alan Kay had provided services to oversee construction. On July 29, 1988, these principals and many grateful children and their families gathered for the inn's first groundbreaking.
"Fourteen years have gone by since the original groundbreaking ceremony," said Wiener. "The fact that we are here to break ground again to expand the inn is a tribute to just how successful the Children's Inn has been in accomplishing its mission. The inn has broken ground in other ways, demonstrating how well a public-private partnership can work, how supporting families can lead to important advances in the laboratory and clinical research and in terms of being a model center of care for children and families that, we are proud to report, centers are replicating around the world."
In June 1990, the Children's Inn opened its doors to the first families, following a ribbon-cutting ceremony attended by then President George Bush and First Lady Barbara. Since then the facility has been in continuous operation, 24-hours-a-day, 365 days a year. During the past 12 years, Wiener reported, more than 4,000 seriously ill children and their families have made in excess of 23,000 visits to the inn from all 50 states, 57 countries and 2 U.S. territories. "We have met some of the most amazing children and families during this time who have inspired us with their courage and with their resilience," she said, noting that 570 residents have lost their battles against disease. "Each of them will be remembered and will always hold a very special place in our hearts. Their lives, their fight, their courage allow us to continue our fight and strengthen our resolve to find answers for the diseases that took their lives prematurely. There is no question that the warmth and solidarity of the inn stands in sharp contrast to the isolation of a motel room."
Introduced as the "matriarch of the inn," NIH deputy director Dr. Ruth Kirschstein said that as a longtime neighbor of the inn's, she and her husband, NCI deputy director Dr. Alan Rabson, have watched every brick being put in place, attended the inn's annual picnics and met many of the families.
"In my role as acting director of NIH," she continued, "I've been able to observe how well this very important partnership between NIH and the inn works. The partnership that improves the health of children here improves the health of children everywhere. The inn has had a profound effect in changing the course of medicine."
Kirschstein reported that although the inn began primarily housing children in NCI protocols, now 12 of the 27 institutes have pediatric clinical research projects from which they refer children and their families to the inn. "No wonder you've run out of space," she observed.
From 1998 to 2001, Wiener said, families were turned away on nearly 500 occasions because of space limitations. "I'm not sure if it's harder for the staff person who has to share the news or the child and family who hear the news that there's no room at the inn," she noted. "You can imagine how difficult it is to add this burden to an already stressed child and family."
Kirschstein reaffirmed the agency's lead role in accommodating and supporting the inn.
"NIH's commitment to reducing the stress on the families of chronically ill children will continue in the years ahead," she said, "as will our commitment to this public-private partnership. Research has a definite link to family-centered care. It's been said that NIH heals the body while this inn heals the soul and heart of the children and families. I believe this is true and I'm honored to be a part of a project that brings out the best in our people, our government and our communities."
The benefits of family-centered care are upheld by research, according to Wiener. "Children who stay at the inn are not only less isolated, depressed and anxious," she said, "but also less resistant to returning for treatment."
Echoing those words was Clinical Center director Dr. John Gallin, who recalled many of his own patients who have benefitted from the inn. "Patients come here mainly for hope hope that maybe we'll do something for them through our research, hope that maybe our research will help their families, and hope that if not for themselves or their own families directly, maybe others with the same sorts of problems will be helped," he said. "That's why people come, and come from great distances. My patients often spend months in the hospital, sometimes years. Children 3 years old spending a year or more one-third of their lives in the hospital. Imagine the impact of the stress on their families. What impressed me most before the inn opened was the number of families I saw fractured as a result of this experience. It was really devastating. The Children's Inn has gone a long way to correcting that. Now the children can be near their families. They don't worry about the financial pressures of finding a place to stay, plus they have this wonderful home away from home with a community of support."
The new wing slated to open in 2003 will provide space for 18 more families, bringing the inn's total capacity to 55 families.
"Soon the noise will abate from this construction," Gallin promised, gesturing over his shoulder toward the ongoing work on the new Clinical Research Center. Also under way in the same vicinity on campus are building projects for a new fire station and a Family Lodge, which will offer families of adult patients the same support the inn provides to pediatric patients. "The ugly wall will disappear," he said, "and it'll be a nice slope of lawn leading to the new Clinical Research Center, which will have a new pediatric clinic on its ground floor as well as expanded pediatric space."
Concluded Merck's Taylor, "Families support families. We know from seeing them and from hearing them that they are far better off in the comfort of the inn. We also know that children at the inn respond far better to their treatment protocols. Ultimately this translates into better research for new medicines to the benefit of all children. On behalf of Merck, I'd like to express my appreciation to all of you who have made the inn so special: the NIH officials and staff, the hands-on board of directors, the excellent inn staff and the hundreds of volunteers and supporters of all kinds. Mostly, though, I'd like to extend our best wishes to the children and their families who bring life to the inn and make it a place of hope and healing."
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