98292 Being a parent is scary.

I remember when my first son was born I looked at him and was overwhelmed.  This person was my responsibility.  Even as a pediatrician, I felt a sense of being lost in the sea.  Remembering this feeling makes me have much more compassion on my patients.

The incredible fear the can carry into the office is palpable.  I think you have to be a parent to understand.  Most of the time I can find ways to diffuse the fear - through reassurance, diagnosis, or making a plan to come to a diagnosis.  This is true in about 99% of the pediatric cases I see.  Most kids aren't really that sick, and those who are can be treated easily.

There is one type of visit, however, that stops me in my tracks.  It is called an Apparent life-threatening event or ALTE.  UpToDate defines an ALTE as:

ALTE is the abbreviation for "apparent life-threatening event", a poorly defined term to describe an acute, unexpected change in an infant's breathing behavior that was frightening to the infant's caretaker and that included some combination of the following features:

  • Apnea — usually no respiratory effort (central) or sometimes effort with difficulty (obstructive)
  • Color change — usually cyanotic or pallid, but occasionally erythematous or plethoric
  • Marked change in muscle tone (usually limpness or rarely rigidity)
  • Choking or gagging

Unfortunately, an ALTE is only observed by the parent at the time of the event.  They present either to the office or the Emergency room understandably panicked.  Their baby has stopped breathing, turned blue, went limp, or choked.  If a parent is not upset, I get really worried.

So the reaction of the parent is extreme.  But what really happened?  Nobody knows.  Did the child really stop breathing, or is it an over-reaction to something that was a little scary?  How do you reassure a mom when you don't know what really happened?

The good news is that there is no clear relationship of ALTE and SIDS (Sudden Infant Death Syndrome).  The bad news is that it is very difficult to figure out what to do.  Studies show that about 50% of the time, a diagnosis can be reached through exam and a careful history.  The most common cause of apnea-like symptoms is reflux (that happens in nearly 75% of babies).

Even with a child who refluxes, however, there is often doubt in the back of your mind as a doctor that you are taking a risk at calling it "just reflux."  So more studies are usually ordered.  Here is a list of possible tests from UpToDate:

In one review of test results from a consecutive series of 243 infants admitted to a tertiary center with ALTE, 3776 tests were ordered, of which 18 percent were positive and only 6 percent contributed to the diagnosis

In the consecutive series of 243 infants with ALTE described above, among 171 infants in whom a particlar diagnosis was suggested by the history and examination, the following tests contributed to establishing the diagnosis:

  • Blood counts, chemistries, and cultures
  • CSF fluid analysis and cultures
  • Metabolic screening
  • Screening for respiratory pathogens
  • Screening for gastroesophageal reflux
  • Chest radiograph
  • Brain neuroimaging
  • Skeletal survey
  • Electroencephalogram
  • Echocardiogram
  • Polysomnography

Among the 72 infants in whom the history and examination were noncontributory, only the following tests contributed to establishing the diagnosis:

  • White blood cell count
  • Screening for gastroesophageal reflux
  • Urine analysis and culture
  • Brain neuroimaging
  • Chest radiograph
  • Polysomnography

This means that there is an average of more than 10 tests ordered per child, with only 6% of them actually helping.  Great.

Most of the time, the kids do great.  Sometimes you put the baby on an apnea monitor - a device that lets out a shrill sound when the breathing rate goes down or the heart rate goes too high or low.  The vast majority of alarms on these devices are false-alarms and can make an already anxious parent become even more anxious.  But what else can you do?

I have never had a bad outcome with an ALTE.  Most of the time the child does just fine.  So when will the good luck end?  It just puts a bad feeling in the pit of your stomach.