Life with a Monitor

"I have the feeling that in the beginning several parents not only did not leave the monitor, but sat and watched it blink as well," writes Anne Barr in her booklet At Home With a Monitor, A Guide for Parents.

"It's very stressful," says Patricia Hughson, whose son Hassan was on a home monitor until he was 8 months old. "You're anxious about using it. You don't know what's going to happen."

According to a report from the 1986 NIH Consensus Development Conference on Infantile Apnea and Home Monitoring, the parental stress comes not only from the full-time responsibility of monitoring but also from assuming the responsibility for resuscitating a baby who stops breathing.

In addition, monitors invade every aspect of day-to-day life, says Brooks. "Because they're afraid they'll miss an alarm, many parents won't take a shower, go get the mail, or even turn on the TV in another room," says Brooks.

"There were times when it was definitely an inconvenience," Hughson says. "He slept in the room with us the first three months he was home, and if he moved the wrong way, it would go off. Of course, that would be at 2 a.m., and then just as we would doze off, he'd wake up for a 2:30 or 3 a.m. feeding."

She adds, however, that having the monitor, overall, was wonderful because on three occasions Hassan, who was born almost three months prematurely, did stop breathing.

While the stress of home monitoring is very real, it can be minimized if the parents have support. "We make sure to train our parents in CPR," says Meny. "We're also available to the parents 24 hours a day, seven days a week, and we make sure that the vendors of the home monitors are also available around the clock."

Parents of babies in the apnea clinic program at Children's Hospital in Washington, D.C., are assigned a visiting nurse. "The nurse goes to the house within 24 hours after the baby leaves the hospital," says Reid. "She reviews how to use the monitor and checks the baby's room to make sure nothing like humidifiers will interfere with the monitor's operation."

Reid has also set up a phone support program that puts parents in touch with each other. "I tried to start a support group here at the hospital, but it was too much trouble for the parents to get down here with their babies — and, of course, the monitors — in tow. It's much easier for them to call each other whenever they have a free moment."

Even the best of support programs cannot change the fact that monitor technology is still imperfect, and even when the monitor works as intended it can't save a baby's life.

"Sometimes the alarms will go off, and the parents respond appropriately and still the baby dies," says Brooks. "It's not 100 percent effective. It seems like such a clear-cut way to prevent a baby's death, but it's nowhere near as clear-cut and straightforward as it seems at first blush."

Does Apnea Cause SIDS?

Talking about infant apnea without talking about sudden infant death syndrome is nearly impossible. But while apnea is of considerable interest to SIDS researchers, whether apnea causes SIDS is still unknown.

In the United States, between 5,000 and 7,000 infants die each year from SIDS, making it the leading cause of death in children between the ages of 1 month and 1 year, according to the U.S. Centers for Disease Control in Atlanta. The incidence of SIDS has remained fairly constant since it was first recognized as a specific medical entity 20 years ago, even though infant mortality has been reduced overall.

Infants thought to be at high risk for SIDS include:

• babies born prematurely
• babies exposed before birth to drugs such as heroin or cocaine
• babies who survived an apparent life-threatening event
• twins of SIDS victims

Whether subsequent siblings of SIDS victims are at increased risk is controversial. "However, the anxiety of parents of siblings is often so intense that these babies are frequently treated as high-risk by the clinician," says pediatrician Robert G. Meny, M.D., of the University of Maryland.

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