If your child goes to the hospital -- and this year between 4 1/2 and 5 million children will require some kind of hospital care -- the event is one thing. The way the event is perceived and even imagined by the patient, siblings and parents is another, and in many ways more powerful.
Exactly how a child becomes hospitalized can occur in dramatically different ways, but whether it is elective or emergency hospitalization the end result is always the same: a total disruption of normal family life.
Think about it for a minute from a child's perspective. A young child, especially one under 5 (and almost one-third of all children in this country are hospitalized before they reach that age) lives in a fantasy world with much of his pretend play built around a cycle of imminent threat or danger. Normally in play, the child easily identifies the threat ("Look at the big monster!"), prepares his defense (either counterattack or retreat) and ends with either escape or victory, but with the child intact.
In the hospital, the child is thrust into a world in which fantasy collides with a reality more horrible than anything his young mind could imagine. A hospital is a world where children are greeted by friendly strangers with smiles on their faces who hurt them. If there is no identifying the threat, there is certainly no defense; every orifice is matter-of-factly entered while new ones are created, by injections and surgery.
If a child struggles, he will be held down by force. Finally, he is separated from Mommy and Daddy, the very people he depends on for protection.
For parents it is not much better. They are forced to surrender their child to strangers they know will inflict pain. Not only that, but they are expected to trust these strangers, even as they hear the cries of their child.
Separated by the sterile abyss of high-tech medicine, helpless to intervene, parents are expected (and should) remain calm for their child's sake. But when it's your child, there's no such thing as a minor medical procedure.
When Fred Rogers' youngest son Johnny was 2, he needed hernia surgery. In order to make the experience less of an ordeal for their son, Rogers, the Emmy-winning creator and star of "Mister Rogers' Neighborhood" and his wife, Joanne, selected a hospital that would do the surgery on an outpatient basis.
Unfortunately, what was expected to be "routine" turned out to be a very difficult experience for the Rogers and a traumatic one for their son.
"In fact, it was several years before we all felt that we understood and had even begun to resolve our feelings about it," says Rogers.
"In our case, we were not prepared for what was going to happen. Not knowing what to expect, we were not able to prepare our son. When we arrived at the hospital, he was abruptly taken from us with no pre-operative sedation, and he was wheeled screaming to the operating room. We later learned that it took 45 minutes to put him to sleep.
"Those 45 minutes have been a recurring nightmare for him and for us ever since. It must have seemed to him that he had been snatched away by strangers who then did things to him that were painful and terrifying. I'm sure, too, that he was deeply sad and angry that we seemed to have abandoned him just when he needed us most."
When Rogers speaks of his son's disturbing experience there is such an urgency to his reminiscence that it's surprising to discover that the event occurred 20 years ago. But as parents who have been there know, when a child is hospitalized the whole family hurts.
Fortunately, pediatric medicine has come a long way in the last 20 years in acknowledging the special needs of hospitalized children and their families, largely thanks to the Washington-based Association for the Care of Children's Health (ACCH), a multidisciplinary organization of 3,500 health-care professionals, educators, even designers of health-care environments.
Materials to help families through the hospitalization of a child were the first produced by Fred Rogers' Family Communications company. He now offers four videotapes on the hospital experience (all accompanied by printed materials), used by over 500 hospitals across the country.
"Many studies have demonstrated that children can be severely upset or traumatized by hospitalization," observes Mary Donnelly, patient representative at Washington's Children's Hospital National Medical Center, who served as a senior consultant for Rogers' hospital-related materials.
"Fortunately, it has also been shown that when children are emotionally prepared, they develop fewer of the behavior upsets associated with hospitalization. Some research shows that by reducing psychological stress, emotional preparation can even make a significant difference in the time it takes a patient to recover."
"The best way to prepare children for hospitalization is to have a prepared parent," says Beverly Johnson, ACCH executive director. "If parents are prepared, they will feel they are somewhat in control of the situation. When parents feel insecure about understanding either what's happening with the disease process or what's happening in the hospital, they're anxious and that anxiety is communicated to the child."
Besides stressing that parents ask questions of their doctor and the hospital so they know what to expect, she offers these suggestions:
* Talk honestly with your child about what will happen and whether things will hurt. Listen to your child's questions and talk about them. If you do not know the answer, find out.
* Help your child play "doctor" and "hospital" to express his fears and anticipate what will happen. Always reassure the child that he will be coming home.
* Read books with your child about the hospital, especially those stories that feature children as patients.
* Try to visit and tour the hospital with your child before the day of admission. Many hospitals now have pre-admission preparation programs for children and their families.
Of course, if your child is admitted to the hospital because of an emergency (and about 30 percent of all child hospitalizations are of an unexpected nature) there won't be time for preparation. But parents, says Johnson, "can still do a great deal, not only during the experience but afterwards, by support and working through feelings after the crisis has past."
One of the more stressful aspects of a child's hospitalization for both parents and children involves separation. To counter this, Johnson suggests that parents choose hospitals that encourage family togetherness with 24-hour visiting for parents, "rooming-in" accommodations, parent participation in patient care and sibling visits.
ACCH is urging hospitals to let parents participate in the anesthesia induction and the recovery room, typically off-limit areas. With "just a few minor changes, if they are handled right," says Johnson, "these crucial moments can become the most positive parts of the hospital experience, not only for how the child perceives it but how the family feels about how they went through the experience together."
The answer, Johnson believes, is for parents to request participation: "Parents can exercise control in the selection of their doctors and their hospitals. I think we can get hospitals to change policy. Parents really need to be advocates for themselves and their children."