For a child, more than for an adult, the prospect of a hospital stay can be distressing and frightening. The younger a child is, the more he'll be upset by the possibility of separation from his parents and home. Not all children will have the verbal skills to easily understand the need for a hospital stay or to effectively communicate the fears and anxieties they're experiencing.

Like adults, though, children tend to do better when they're supplied with basic information about what's going to happen to them. Careful preparation on the parent's part and good, clear, honest communication with the child can make the hospital experience less stressful and more tolerable for all concerned.

Some veterans of repeated hospital visits actually come to enjoy the experience, and look forward to being waited on and being reunited with patients and professionals they've come to know. For others, the experience may become less frightening with time but is always tiresome.

Advance information from his doctor helped prepare Russell Rogers for his hospital stay for spinal surgery.

A child with a neuromuscular disease may undergo hospitalization for any number of reasons, including common childhood procedures such as an appendectomy or tonsillectomy or treatment for a broken limb.

Some hospital procedures, however, are specifically associated with neuromuscular conditions. Tendon release surgery, often necessary in Duchenne muscular dystrophy (DMD), is done to correct a contracture, the tightening of a tendon, often occurring in the ankle. Spinal surgery, or "spinal fusion," is a procedure in which rods are inserted into the back to correct unwanted curvature of the spine, and can be performed for children with DMD, spinal muscular atrophy (SMA) and other conditions causing muscle weakness. Hospital procedures are also necessary to enable a child to use inserted devices that assist with eating and breathing.

Some hospital visits occur as the result of emergencies that require immediate attention. But surgical or diagnostic procedures can usually be scheduled well in advance, allowing for preparation that can make the experience easier for your child to endure.

FACTS FROM YOUR DOCTOR

The first step to a positive hospital experience is having a doctor you trust and your child feels comfortable with.

In 1996, 13-year-old Russell Rogers of Memphis, Tenn., had spinal surgery necessitated by his DMD. "The doctor explained to us exactly what would be done, about how they would cut him on his back, and about how many rods they would put in," says his mom, LaRue Rodda. "And the MDA health care service coordinator talked to us at great length about the procedure."

This year, Russell was rushed to the hospital for pneumonia. "He'd been running a high fever," Rodda says. "He said he was hurting on his left side. I immediately thought of his heart and took him to the emergency room. But Russell said, 'I have pneumonia and it's on my left side,' and the doctor told him he was right. He was there for six days. They gave him antibiotics and breathing treatments to make him cough."

For a previous tendon release procedure, the anesthesiologist sat down with Russell and explained how they were going to put him to sleep. "They have different flavors for the anesthesia, strawberry, lime, bubble gum," his mom recalls. "Russell got to pick the one he would smell when he went to sleep."

His mom says that since the spinal surgery, Russell is much straighter, breathes better and has grown an inch.

ADVANCE PREPARATION

Many specialists and professionals will be interacting with and caring for your child at the hospital. If possible, see if you and your child can meet them in advance. Talk to them. Tell them about your child's special needs, his or her particular fears and sleeping or eating habits.

Don't assume that all the professionals you're dealing with will be knowledgeable about the particulars of your child's neuromuscular illness. It may be wise to bring some pamphlets from your local MDA office.

Jason Wessell

There may be an orientation tour available at the hospital that will allow you and your child to see where he'll sleep and where the surgery will be performed. If not, at least ask for brochures to help you and your child understand the procedure that's scheduled.

Jason Wessell, 12, of Beaverton, Ore., has DMD and recently underwent a spinal fusion operation. His mother, Jan Yutzy, remembers: "The day before the surgery, he got to see all the different places, the nurses and all the people that were going to be caring for him.

"They'd given us literature, which I think was very helpful," Yutzy says. "They showed us X-rays of another child that had the procedure done so we could see what the rod actually looked like in the back. Jason was still apprehensive, but at least he had some idea what to expect.

"The hardest part for me was the waiting while the surgery was going on. It took about 5½ to 6 hours."

SHARED EXPERIENCES

Ask at the hospital and at your local MDA office if you can be connected to other families that have undergone the procedure your child is scheduled for. You'll gain helpful information about what to expect and, with any luck, you'll get some much-needed reassurance that your child will come through the experience OK.

If a parent feels confident and secure about a hospital stay, the child will sense this and feel more secure, too. Moreover, if a parent projects a general attitude of trust and confidence about the medical profession, the child will tend to feel the same way.

Alan Nygaard, 11, of Deer Park, Texas, has DMD and was hospitalized in March for a collapsed lung.

Alan Nygaard

"A year before, he was in the hospital to have his tonsils taken out and his spinal cord straightened," says his mom, Snooks. "This March, he had a cold and congestion and wasn't getting any better. We got an X-ray and took him into Texas Children's Hospital because his lung had collapsed."

Alan was placed in an iron lung, an enclosed ventilation device that assists with breathing by creating negative pressure outside the body, thus causing the lungs to expand.

"He was afraid at first, he'd never been in one," Snooks says. "But he knew I was there all the time and wouldn't leave him. They trained me on how to put him in the lung and hook him up and do all the things he had to do."

Jonathan Clements, 9, of Missouri City, Texas, has SMA and sleeps in a similar breathing device at home. The hospital makes one available for him whenever he visits.

"We've been to the hospital eight times in the last year," says his mom, Linda. "He's never weighed very much because he has problems with chewing and swallowing, so we had a feeding tube put in this past September. We were worried about having it done, but it went really well. He's gained 8 pounds since then.

Jonathan Clements

"Before the procedure, I took him up to see some of his friends at the fire station. We met them through MDA's Fill the Boot campaign. He loves going there, and the paramedics were able to talk to him about the procedure. One of the guys there had a brother who had a feeding tube put in.

"It think it really helps to talk to someone who has already been through it. We're looking at the possibility of Jonathan needing to get a tracheostomy, and I'm in the process now of trying to find someone who's been through it, so we'll know what to expect before, during and after."

CHILD LIFE SERVICES

A discipline called child life services exists for the sole purpose of making the hospital experience easier on children. Many hospitals, especially children's hospitals, will have one or more child life specialists on staff interacting with children and parents on a daily basis.

"They're not nurses, and they're not teachers or occupational therapists, they're somewhere in between," says Jerrian Wilson, director of the Child Life Department at Johns Hopkins Children's Center in Baltimore.

A child life specialist is an expert on determining what kind of information a child can handle and how it can be communicated in a way that is appropriate to the child's age and intellectual and emotional capacities.

"Sometimes kids worry about whether they're going to wake up during surgery, or how they're going to look afterwards, or if their mom is going to be there when they receive anesthesia," says Wilson. "Psychological preparation doesn't make the child worry-free, but it does help ensure that when she wakes up, she'll feel that what happened is what she expected would happen, and she'll trust the people around her."

COMMUNICATION TOOLS

Dolls are used at Johns Hopkins as an effective communication tool. A child life specialist can point to places on a doll to explain how a procedure will be done. The child is encouraged to decorate the doll and name it, and in cases when a child is unable to convey a fear about surgery directly, the specialist can ask the child to talk about what the doll is afraid of.

"All of a sudden the child switches from the third person to the first person, and is obviously talking about herself," says Wilson.

Child life services may include daily activities such as games, videos and story time. Activities for teens might include writing poems or putting out a newspaper about the hospital experience.

Wilson says that activities can be tailored even for children who are immobilized or unable to sit up. "I've seen the child life specialist build a Lego house with a child, and the child gives direction on what color brick goes next," she says.

DIFFICULT MOMENTS

Ericka Sutton, 13, of Atlanta has Charcot-Marie-Tooth disease and recently had her first major surgery, to correct spinal curvature.

Ericka experienced a loss of movement on her left side after the surgery. "She needed to have extensive therapy to get that movement back," says Ericka's mom, Noreen. "Therapy starts the day after surgery. Ericka was very busy."

"Too busy!" says Ericka, who was awakened every morning by a doctor's arrival around 6:30, and then plunged into therapy. "After you finish your exercises for the day, there are things you can do at night like teen time," Ericka says. "We sat around this table and made little bottles filled with colored sand."

One day Ericka had a mood swing. When the doctors came in, she told them off in no uncertain terms.

"A nurse had promised her they wouldn't take any more blood," says Noreen. "But then they turned around and came in to do it. Ericka already had her mind made up. 'Nobody's going to touch me! I hate everybody!' It was one of those mornings. But the doctor was very sweet, he said don't worry about it, patients go through that."

Indianapolis resident Ryan McDonald, 18, has SMA and has been admitted to the same children's hospital many times since he was 9, for surgeries and respiratory infections. He's reached a stage where the staff treats him as an expert on his own condition and always consults him before making decisions.

"I don't want it to sound as if the doctors don't do anything, but they trust me at this point," he says. "I'm usually happy there, but occasionally there's someone I don't get along with, or someone who doesn't respect my knowledge and experience."

McDonald believes he was fortunate to have gone to a children's hospital, because he made many friends there over the years, including kids with other diseases such as cystic fibrosis.

BEING THERE

Safe at home: His mom's reassuring presence helped Russell Rogers come through his hospital experience with flying colors.

A key factor in a positive hospital experience is for one or both parents to remain with the child as much as possible. Today this is generally encouraged by hospitals; there may be extended visiting hours and a bed or couch or cot in the child's room for a parent to sleep on.

"Having a parent there is vital, especially for younger children," says Wilson.

Noreen Sutton agrees, saying: "The nurses sometimes are a little short staffed. They're doing their best to take care of your child, but they have a whole lot of other children to take care of, too. The children need attention, not just medical attention, but 'love' attention, too."

By being there for your child, by giving clear information that's age appropriate, by letting him know where he'll be and who he'll be dealing with, and by helping him have a positive attitude, you can minimize your child's anxiety and make the hospital experience a tolerable, nontraumatic part of his medical journey.