Children’s Inn: New Help for Tiny Patients : Medicine: A low-cost halfway house for more than 100 children and their families is opening at the National Institutes of Health in Bethesda, Md.
Tyler Small looks like any healthy 5-year-old kid. He has blond hair, an impish grin and an appetite for hot dogs. His 40-pound body is dressed in a Teenage Mutant Ninja Turtle shirt with matching socks and shoes.
Yet there is something unusual about him too. He adores broccoli topped with cheese for breakfast, lunch and dinner. (George Bush, take note.) And, from beneath his shirt protrude two thin plastic tubes that are tethered to an intravenous drip hung on a stand that accompanies his every move.
Tyler Small has AIDS.
Born to an IV-drug-abusing prostitute, his illness was diagnosed 2 1/2 years ago. Since March, he and his adoptive mother, Cindy Small of Las Vegas, have been making biweekly visits lasting up to seven days to Bethesda, Md., where he is undergoing experimental drug treatment at the National Institutes of Health.
When Tyler is not required to be in the hospital, they stay at a modest motel nearby, as do other NIH families. NIH picks up the cost of travel and treatment, and allots them $65 per day for lodging. After the bill is paid, Cindy Small is left with a total of $9 a day for meals at the hospital cafeteria. Meanwhile, her husband Larry, a drugstore assistant manager, remains at home to care for their three other children, ages 10 to 13.
The Smalls’ world, and that of other families like them, is about to enlarge. On their next trip to Bethesda, Cindy and Tyler will be able to stay at Children’s Inn, a $4.4-million home away from home for chronically ill children and their families that opens today on the NIH campus. For $10 per family per night (or for free if the family cannot afford that), the inn offers a private room and bath, plus two other important elements: the opportunity to share common experiences with other families and space enough for children to play.
In this sort of halfway house, white coats and stethoscopes must be checked at the door. Here families can cook and care for, bathe and discipline their children, much as they would do at home. And, whereas one parent usually accompanies a sick child to the hospital, the space offered by Children’s Inn will make it possible for other family members, including brothers and sisters, to be there too. At the same time they will have the help of other families in learning to deal with illnesses, prognoses, courses of treatment and the changes that these make in the family structure.
“It is a recognition that it is important to treat physical illness in tandem with the emotional well-being of the child and the family,” said Dr. Philip Pizzo, 45, chief of pediatrics and head of infectious diseases at the National Cancer Institute.
Children’s Inn is the newest and most elaborate facility of its kind. It is a 36-bedroom, 1 1/2-story, 32,000-square-foot building on two sylvan acres. Substantial efforts were made to disguise its institutional character with homey touches. Thus the hotel-like bedrooms and the public rooms are decorated with original prints and crafts such as quilts and Shaker pieces.
“It’s gorgeous!” exclaimed Cindy Small as she toured the premises. For her it means the end of eating peanut butter and crackers in a hotel room, the end of stares by other motel guests. Best of all for the Smalls, it means a chance for the family to be there together.
The concept of low- or no-fee communal housing for patients and families originated in 1972 in Buffalo, according to the National Assn. of Hospital Hospitality Houses. Kevin House was established by the parents of a 12-year-old leukemia victim. When they took their son for treatment, they noticed other parents sleeping in automobiles, existing only on sandwiches. After Kevin’s death, his parents bought a $17,000 house in Buffalo and set up a nonprofit corporation to run it.
Today, there are several hundred nonprofit patient-family residences in existence throughout the country. The best known of these are the Ronald McDonald Houses, which number 133 in the United States and Canada.
Children’s Inn was designed as a model facility. Advice was sought from other hospitality house directors, plus a multitude of professionals, including physicians, social workers, computer experts and safety specialists. Parents of sick children were also asked what features mattered most to them (The answers were: privacy and interaction with others).
The heart of Children’s Inn is the hearth, from which a round stone chimney eight feet in diameter rises to a skylighted cupola.
The dual-level community room surrounding the gas fireplace is also its symbolic heart. It is here that sick children, parents, siblings and relatives are expected to gather to participate in one of the most important aspects of the house: emotional support through sharing of experiences, hopes and fears with one another.
There are no required activities or counseling, no pets, no smoking, no alcohol and no private TV.
Danielle Speller, a 9-year-old sporting a Simpsons T-shirt, grimaced when she learned no television sets were installed in the bedrooms; her father, Leroy Speller, cheered. “You watch too much TV anyway,” he kidded her. The absence of bedroom sets is meant to encourage families to interact in the common rooms. However, bedrooms are cable-ready, and a number of portable TVs are available for patients too ill to get out of bed.
Danielle, who has Cushing’s disease, a metabolic disorder that stunts growth and causes obesity, has been traveling regularly from her New Jersey home to NIH since February. Physicians are “giving me pills to make me grow,” she explains. Like other parents, Leroy Speller, who is employed in a General Motors parts factory, welcomes Children’s Inn as an alternative to the motel that he finds too expensive and too far away.
Too far away is not in the vocabulary of Cherie Harden, 17, of Farnham, England. Each month the teen-ager, who suffers from a rare metabolic disease called Niemann-Pick, and her mother, Norma Cockroft, must cross the Atlantic because there is no treatment available in Britain. Neighbors in their village hold charity cricket matches to pay for the flights.
Cherie is on a cholesterol-free diet, which makes eating at a motel difficult. Norma Cockroft looks forward to cooking proper foods for her daughter at Children’s Inn. Each of the inn’s two kitchens contains a pair of stoves, microwave ovens, dishwashers, sinks, industrial-size ice machines in adjacent pantries and four refrigerators. Two refrigerators in each kitchen are reserved for patients’ medicines. Only two families can cook at one time in a kitchen without crowding. “Mostly they’ll be reheating meals in the microwave. We don’t expect anyone to be doing a Thanksgiving turkey here,” executive director Andrew Tartler said.
The homelike atmosphere is enhanced by the absence of tile floors, fluorescent lights and hospital beds. But there are some special features. For example, there are two playrooms for small children: one is filled with sunlight; the other is shaded because chemotherapy makes skin sensitive to light. Play areas include seats for adults. The custom-made furniture had rounded edges to prevent injuries. Similarly, no glass tops cover tables. The carpet is not only soil resistant, but can be safely bleached to prevent infection. The ground floor contains large storage areas for bicycles and other playthings as well as wheelchairs and medical equipment.
All bedrooms have private baths. Each of the four sleeping wings has a room that is accessible for the disabled and a laundry room. Other rooms include a library, a game room, a “quiet” room for meditation, and a computer room for children’s links to schools programs and for games--adults can use it too if they behave. Outside there are barbecues and basketball hoops plus sidewalks perfect for tricycle riding and plots ready for amateur gardeners.
Each wing is decorated in a different color scheme--blue-gray, peach, mauve and soft green--with complementary floral draperies. Country pine sofas and chairs are covered with tapestry-type fabric or woven patterns in jewel tones. Depressing colors like brown, gray and black were avoided; hot pink was a no-no.
“It reminds kids of the pills they have to take,” explained interior designer Pamela Hughes. The bright primary kindergarten colors were eschewed because this is a facility for all ages. For the same reason, the artwork is not primarily childlike in nature.
Watching workers put the finishing touches on the inn, Pizzo exclaimed, “This is a fantastic moment.”
The moment was a long time coming. Back in 1981, Pizzo began dreaming out loud about a temporary lodging for cancer patients and their families. He was getting nowhere fast in his efforts to buy a residence when a chance occurrence in 1986 became the catalyst that brought his dream to fruition.
Carmala Walgren, wife of Rep. Douglas Walgren (D-Pa.), was visiting their teen-age baby-sitter, who was in NIH’s clinical center after developing cancer. Talking with another patient’s mother, the congressman’s wife discovered that the federally funded hospital had cut off free long-distance phone service, the cherished lifeline between sick children and their relatives back home. Besides the cost, government auditors objected to patients using phones intended for federal employees making business calls. Walgren took the matter to then-House Speaker Jim Wright twice, and within six months the newly installed coin-operated phones were removed, she said.
Soon Walgren and two other congressional wives, Debbie Dingell, wife of Rep. John Dingell (D-Mich.), and Chris Downey, wife of Rep. Thomas Downey (D-N.Y.), formed the Friends of Children’s Inn and became involved in the quest for an NIH patient-family lodging. The breakthrough came in 1987 when Merck & Co., the pharmaceutical giant, agreed to fund construction of an inn on land donated by NIH. It helped that Merck’s president, Pindaros Roy Vagelos, was a former NIH research scientist.
Merck eventually contributed $3.7 million, the largest single gift it has ever made. Total corporate and private donations were in excess of $5 million, meaning there are sufficient funds to operate the facility for the next 18 months, Thereafter about $350,000 must be raised annually to meet its operating budget. NIH will provide upkeep, utilities and janitorial services. A $500,000 gift from the Children’s Cancer Foundation is earmarked for an endowment.
The facility is available to patients up to age 25 and their families for both short and long-term stays. The average stay is three to five days, but some patients remain from two to five months. Children’s Inn can accommodate about 109 people, if family members are tucked into two double beds and pull-out sofas in the bedrooms. Its capacity slightly exceeds the immediate housing needs of NIH’s pediatric patients, but increased numbers of AIDS cases in the future are expected to fill any empty spaces. About half the children have cancer, the others having a variety of diseases or are undergoing transplants.
The inn has a full-time administrative staff of four, supplemented by volunteers. While emergency assistance is available in acute cases, medical care is usually limited to that provided by the family, such as injections or bandage changes. Children’s Inn is not a hospice.
“That is not to say there are not acute deaths here,” resident manager Kate Higgins said. “But our motto is hope.”
This is Children’s Inn’s commitment to Tyler, Danielle and Cherie and their families as well as the many others like them to follow.
“I think of it not only as a place of comfort for patients of today, but as an insurance policy to allow research on these diseases to continue,” its founding father said. “It creates the reality that NIH is committed to children.”
For the location of a low- or no-cost patient-family residence in your area, contact the National Assn. of Hospital Hospitality Houses at (800) 542-9730.
