Fearful Lullaby : A Respiratory Ailment Called ‘Apnea’ Often Strikes Premature Babies--and Terrorizes Their Parents

Layne Melzer awoke around 8 a.m. Jan. 6 and looked at his 6-week-old son, Shane, beside him. Most mornings, it was the baby who roused him at dawn with lusty yells for food, so Melzer was surprised to find Shane still asleep. Then he took a closer look.

Shane’s skin was dusky, and he did not seem to be breathing. Melzer jiggled him tentatively, but the baby did not rouse. His color was darker now. Bluish.

Yelling to his wife to call 911, Melzer grabbed Shane and shook him--hard this time. The baby’s eyes opened at one point, but his gaze was blank.

Frantically trying to recall resuscitation techniques, Melzer put his mouth over Shane’s and puffed twice. Then he turned the baby over and slapped him on the back. He slapped him again, and then a third time. Suddenly Shane gulped for air and began to cry. A moment later, the rescue squad arrived.

The crisis, though, was far from over. By noon, Shane was admitted to Childrens Hospital of Orange County with a tentative diagnosis of severe apnea.

The term apnea comes from the Latin words a and pneuma , which means without air. Medically, it refers to pauses in breathing.

Everyone pauses in breathing. If you take a deep breath, you probably won’t breathe again for several seconds because your body has more than enough oxygen. When the oxygen starts to get used up, the brain sends a signal, and you feel the urge to breathe again. That ends the apnea spell.

But apnea becomes a medical problem when the pauses in breathing are unusually frequent, slow the heart’s beating rate or last longer than 20 seconds, says Dr. Carrie C. Worcester, director of the neonatal intensive care unit at CHOC.

Apnea is sometimes misunderstood to be a precursor of sudden infant death syndrome, in which apparently healthy babies mysteriously die during sleep.

But children with apnea rarely die, Worcester says. And there is no evidence that a baby with apnea is at greater risk for SIDS.

The main consequence of apnea is damage to the brain and heart because of repeated periods of inadequate oxygen, Worcester says. A baby with untreated apnea can, in later years, exhibit learning and behavioral problems, even cerebral palsy, associated with brain damage.

Apnea usually falls into one of two diagnostic categories: obstructive apnea or central apnea.

In obstructive apnea, the brain sends the appropriate signals for breathing, but some type of blockage in the airway prevents adequate oxygen flow. In older children, enlarged adenoids or tonsils may cause apnea-like symptoms such as decreased blood oxygen levels and slowed heartbeats. Sometimes apnea is the secondary result of a condition called gastro-esophageal reflux, in which weakness in the muscular ring at the junction of the stomach and esophagus results in food and stomach acids backing up into the trachea or windpipe.

When the underlying causes of obstructive apnea are treated, the breathing problem usually goes away, says Julie A. Herda, the apnea nurse specialist at CHOC.

In central apnea, the problem resides in the brain. The signals to breathe are infrequent or irregular, and, as a result, the baby does not take in enough air to meet the needs of its brain, heart and other organs. It is not unusual, Herda says, to find central apnea in premature infants, whose brains are not as developed as full-term babies. The apnea usually resolves into a normal breathing pattern when the babies catch up developmentally, typically by six months of age.

Shane Melzer’s problem was central apnea, exacerbated by a viral infection.

He was born at Hoag Hospital in Newport Beach on Nov. 28, seven weeks before he was due. His mother, Corinne Melzer, had been hospitalized for the 10 preceding days in an effort to stop premature labor and give her baby extra time to develop his lungs, a major factor in the survival of premature infants.

The strategy seemed to work. Despite his prematurity, Shane weighed a relatively robust 5 pounds, 1 ounce at birth, and was able to breathe without the help of a respirator. On Dec. 8, after a basic sleep study at Hoag showed no medically significant apnea, Shane was deemed strong enough to go home.

Home for the Melzer family is Lake Forest. The baby quickly adapted to his new environment, eating well and sleeping most of the time, as premature babies tend to do. Corinne Melzer concentrated on helping her other son, Aaron, 2, adjust to his new brother.

Things went relatively smoothly until January, when Corinne, Aaron and Shane all came down with a respiratory virus. Corinne had it the worst, developing strep throat and losing her voice for several days. Shane seemed to have the mildest case, mostly congestion in his nose that was gone after a week.

Layne Melzer saw his wife getting sicker and decided to sleep with Shane in another room so Corinne could at least get a full night’s sleep. The following morning, a Saturday, was when he discovered Shane not breathing.

At CHOC, Shane’s breathing pauses were found to be frequent, long and responsible for repeated episodes of bradycardia--the medical term for an abnormally slow heart rate. He met all the criteria for a diagnosis of severe apnea. Two days after being admitted to CHOC, he was transferred to the intensive care unit.

He just got worse. At 3:30 the morning following his transfer, the Melzers were awakened by a call from a doctor in the unit. Shane’s apnea was so bad that he now required the assistance of a respirator to survive, the doctor told them.

“That night was horrible,” Corinne Melzer recalls. “He was deteriorating so quickly that we thought he was going to die.”

But Shane was fortunate to be in a hospital with expertise in the treatment of apnea.

CHOC’s Apnea Electrodiagnostic Center, co-founded in 1984 by Worcester and Dr. David Hicks, studies such problems in Orange County babies. Some patients are referred by hospitals in Riverside, Los Angeles and San Bernardino counties as well, says Teresa K. O’Sullivan, technical coordinator of the center.

Most of the roughly 400 children annually tested at the center, which operates around the clock, are under 18 months of age. But some patients, usually those with obstructive apnea, can be as old as 18 years, O’Sullivan says.

The center consists of two rooms--one equipped with a crib or bed, a couple of easy chairs and a light dimmer. Soft-sculpture clowns decorate the wall, and teddy bears vie for space with medical paraphernalia on a shelf at the head of the bed.

The other room houses the electronic gear. When the patient goes to sleep, brain, heart and respiratory functions are measured in this room on a polysomnography machine. The machine resembles an elaborate version of an electroencephalography machine, recording the signals from 17 electronic monitors attached to the patient.

For a polysomnography study, technicians attach three electrodes to the patient’s chest to measure heart function during episodes of apnea. The patient also has two so-called strain gauges, one attached with a dissolvable cement to the upper chest, between the nipples, and another across the lower abdomen. These measure the force and frequency of chest and belly expansions as the patient fills his lungs with air. In Shane Melzer’s case, the abdominal measure was the significant one since, as with many babies, he is a “belly breather,” meaning his abdominal muscles do most of the work in inhaling and exhaling.

Another wire leads from a pulse oximeter strapped to the patient’s big toe. By means of a tiny infrared light, the oximeter records the amount of oxygen in the blood. Six electrodes are attached to the head to measure brain activity; another records blood pressure; and two more are placed at the outer edges of the eyes to measure their movement during sleep. Eye activity indicates whether the patient is in a lighter, dream stage of sleep (known as REM, for “rapid eye movement”) or in a deep sleep, which may be significant in understanding the pattern of apnea, according to O’Sullivan.

Still another electrode is attached to the chin at the location of the diastric muscle, which a baby uses to suck. This records muscle tone during sleep.

Finally, a nasal thermistor is taped outside one nostril to measure the force and frequency of airflow through the nose. If the patient stops breathing, the spiky line on the polysomnography printout representing data from this monitor immediately goes flat. So do the lines showing chest or abdominal contractions.

The test, which is typically covered by most private and public health insurers, costs just over $1,200, Herda said. A home monitor ranges costs up to $400 a month, if paid by a health insurer, but if the family does not have coverage, the equipment company generally discounts the cost, she said.

For most of his hospitalization in January, Shane Melzer was too sick to be given a polysomnography test. It was several days before he could be taken off the respirator. But on Jan. 14, he was successfully weaned from the machine, much to his parents’ relief. Three days later, Shane was taken to CHOC’s apnea center for his first detailed polysomnography study.

The results showed a pattern of apnea consistent with prematurity, says Herda. Shane had more irregularities in his breathing pattern and more frequent pauses than a full-term baby would, but none of them were long enough to be harmful. His heart rate had returned to normal and was not affected by the pauses.

In short, Shane had none of the medical problems of apnea that he had arrived at the hospital with 11 days before. Doctors concluded that his apparently mild, prematurity-related apnea had been dangerously aggravated by the respiratory virus he and his mother and brother had shared a few weeks before. But now that the virus had run its course, his apnea had returned to a normal and relatively safe pattern for premature infants.

Just to be sure, Shane was sent home Jan. 20 with a monitor that would sound an alarm if his breathing pauses during sleep got too long. Herda met with Layne and Corinne Melzer to teach them how to respond to an alarm and to make sure that they were comfortable with the equipment. She also gave the Melzers a phone number at which she or another member of CHOC’s apnea team could be reached, day or night.

In addition, Shane was put on a caffeine-based medication. The idea, says Herda, is to stimulate the part of his brain that controls breathing so that it will continue to send breathing signals even if Shane has another cold.

Shane’s apnea has caused no more trouble.

His breathing pauses have never been severe enough to trigger the monitor, his parents report, and in every other respect, he is thriving.

What Happened When Shane Stopped Breathing

Thirteen-week-old Shane Melzer underwent a polysomnography test on Feb. 21 to measure the extent of his apnea (cessation of breathing) during sleep. Below is a 40-second section of that test, during which Shane had one breathing pause of more than six seconds. 1. The trigger apparently was a deep sigh. 2. Abdominal movement ceased when Shane stopped breathing. 3. During this period, air flow through the nose stopped. 4. Tension returned in his muscles as Shane started sucking his pacifier, signaling other muscles to resume respiratory effort. 5. Breathing resumed. 6. The amount of oxygen in the blood is decreased because of the earlier pause in breathing.

Source: Childrens Hospital of Orange County