Despite 10 days in the hospital, chest surgery and continuous IV therapy, this is how my daughter, now 7, recalls her hospital stay of three years ago: "There were lots of surprises. I got lots of attention. I got my parents all to myself, and I got to watch TV while I ate."
Any bad parts?
"Well, it did get a little boring."
Forget the ventilator, the chest tube and the fact that she almost died of an acute bacterial infection. She remembers "boring"--which just shows that going to the hospital for kids can be much harder on the parents.
However, it's precisely that parental anxiety that can make the hospital experience for children much worse than it needs to be, experts say.
"Out of their own fear and anxiety, parents tend to gloss over, sugarcoat or spring something on their child suddenly," says Jennine Moritz, a clinical child psychologist and assistant professor of psychiatry at the Virginia Commonwealth University Medical College in Richmond, Va.
Children who aren't told what to expect stop trusting everyone, experts say, making their care and recuperation more difficult for them, their parents and the doctors and nurses who must care for them.
In short, the parents blow it.
"In the absence of information, kids will create their own scenarios, which will be way off base," says Moritz, who has co-written "The Hospital Survival Kit," an interactive workbook for parents and children that prompts open discussion.
What kids in this situation need most from Mom and Dad are truth, support and advocacy.
How much to tell a child and when depends on their age and development, says Barbara Korsch, a pediatrician and professor of pediatrics at USC. In general, younger children require less notice and fewer specifics. By a child's second year, depending on what the child can understand, parents need to provide an explanation--but not necessarily much notice. Tell them the day they go to the hospital or, if they'll be going early in the morning, the night before.
"You don't want them anxious for five days," she says. Three-year-olds could use a bit more notice, however, and by age 4 children may need a week. Adolescents are very curious and want to know everything as soon as you know it.
"Explain everything in terms of what the child will experience, and use reassuring words like 'fix' and 'make better,' " Korsch says. Assure them, above all, that you won't leave them. Separation and pain are the child's two primary concerns.
But don't lie, adds Korsch, whose book, "The Intelligent Patient's Guide to the Doctor-Patient Relationship" (Oxford University Press, 1998), includes a chapter on preparing your child for surgery. She cringes when parents say things like: "The doctor's not going to hurt you," and, "If you're bad, we'll keep you here."
"If your children can't trust you, who can they trust?" she says.
As a child life specialist at Childrens Hospital Los Angeles, Linda Garcia is responsible for calling parents before their child's admission.
"I often find that not much has been said," she says.
Parents say that they don't want to upset their child or that they don't know what to say. Some bring their child to the hospital and still haven't told him or her what's happening, she says.
"As a result, they become very upset and unmanageable," Garcia says. "I'd almost rather they took the child home and we started over."
To prepare kids for a hospital visit, Garcia recommends that parents read their children a book on the subject (several good ones are available just for kids) and take a hospital tour, if possible. Though probably not helpful for children under 5, tours before admission can make older children feel less intimidated.
Garcia also suggests that parents make a point of talking to a child life specialist, who's specifically trained to work with hospitalized and chronically ill children. On staff at many major hospitals and all children's hospitals, these specialists will gear their discussion to a child's age, development and procedure.
But not everyone gets that kind of lead time. At Childrens Hospital Los Angeles, only 30% of hospital admissions are scheduled. Sixty-three percent are urgent and come either from the emergency room or directly from a doctor's office. (The remaining 7% are transferred in from other hospitals.) Thus, books, tours and lengthy feeling-based chats often aren't an option. Instead, parents have to explain on the fly or after the crisis.
Whatever the situation, here are a few tips experts say can make a hospital visit less traumatic for kids:
* Rally support. Get the child's teacher or day-care provider to enlist the class' support, Garcia says. "Kids love getting cards and murals from classmates because it makes them feel still connected to their other world."
* Bring the child's favorite toy, blanket or pillow. If the child has a special night light or lullaby tape, that's good too.
* Let the child communicate through play. A doll and a toy medical kit can help the child act out some of his or her anxiety and feel more in control. By applying bandages and pretend shots, he feels he's not always the one getting poked or bandaged. "But don't overdo this," Korsch warns. "Playing out the surgery, for example, would be unwise."
* Relieve guilt. Be sure to tell your child that whatever caused the problem wasn't his or her fault. Even if it was an accident, this is not a punishment. Kids often blame themselves.
* Be an advocate. Ask questions, scout out literature and fight for your kid. Get the food he or she likes. Insist your child be taken to the toilet--if potty-trained--rather than diapered. Try to accompany your child to various procedures, such as X-rays and CT scans, even if staff members are reluctant to let you.
* Model good coping skills. Fall apart in the hall, but try to hold up in front of your child. Although it's OK to tell your child that you're sad or worried, also express how you're handling the problem, that you've found the best doctors and that you're getting informed, drawing on your faith and sharing your feelings.
* Get classwork from teachers. Schoolwork provides a welcome distraction and a hopeful reminder to kids that they will get back to their routine, Garcia says. Children in the hospital longer than 10 days can get a hospital schoolteacher to work with them.
The reality is, say the experts, when given the appropriate information and the truth, children can usually master the situation more gracefully than adults.
"Kids are very resilient if they're given good coping strategies and are insulated with family support," Moritz says.
* Finally, don't hesitate to pour on the presents.
When my daughter was hospitalized, I could hardly see her for all the balloons and stuffed animals in her room, and she seemed to rally from the attention. I even recall having a new Little Mermaid nightgown sent by Federal Express.
In fact, now that I think about it, I believe I promised her the world.