Patient Care

Kernicterus Is Observable, Predictable, Curable


 

I recently read your article on the rates of kernicterus and found it quite alarming. I am asking for an immediate apology and a retraction of this article.

This article is interesting since it states that only 25 out of 64,346 hyperbilirubinemia patients actually were truly kernicterus kids. That is a very low stat of 0.0003885 of all children diagnosed with hyperbilirubinemia. It is far less when you take into account all live births. Using DDS as a yardstick may be acceptable, but the surprising conclusion was that treatment made little difference.

To say “The time trend of incidence remained stable during the study years at 0.44 per 100,000 live births” means that nearly half of all babies born (44,000 out of every 100,000) have hyperbilirubinemia. If we use the 0.0003885 multiplier, then we can state that approximately 17 out of every 100,000 live births result in kernicterus. It would be interesting to plot those stats against other states, as well as other countries, to see if 0.0003885 times the total amount of kids with diagnosed hyperbilirubinemia represents a stable sum of actual kernicterus kids.

The clinician’s report seems to imply that kernicterus is an event that is statistically predictable, inevitable, and unavoidable; therefore, in spite of medical intervention, a predictable number of newborns will develop the disease. In a morbid sense, mortality rates are also predictable: “Data from a national database of death certificates revealed a similar stable trend in deaths attributed to kernicterus.”

The bottom line “kernicterus rates remained unchanged in the 1990s” conclusion and the bold citation that “there was not a ‘resurgence’ of kernicterus in the 1990s” are offered up in spite of the zero-tolerance policy of many hospitals that claim to know how to prevent the onset of kernicterus. The monitoring of infants, the early detection of hyperbilirubinemia, the effective and timely use of bili-lights, and possible blood transfusion should be adequate to quash kernicterus forever.

Perhaps newborn patients “with hyperbilirubinemia who are at extremely low risk for kernicterus are being overtreated,” but this does not preclude the need for those at high risk to obtain an early assessment and aggressive treatment. Perhaps the reason why there is no observable change in the incidence of kernicterus over the past 20 years is because the policy does not translate into procedures. Doctors seem to take on a lackadaisical, roll-of-the-dice type of approach to the prevention of kernicterus. Since the numbers are so low, they are not providing the vigilant watch and, therefore, allowing newborns to slip from hyperbilirubinemia to actual kernicterus.

The solution is there; the problem is the implementation. And it is not even a matter of insurance costs, since the therapy for prevention and/or intervention is extremely cheap. The needless suffering of a single kernicterus kid flies in the face of the fact that this is an observable, predictable, and curable disease.

The statistics may be right, but the medical approach is wrong. Whether it is 17 in every 100,000 or 1 in every 5,882, it makes a big difference if the 1 belongs to you. The only acceptable number is zero. The question is not about resurgence; it is more about why we are still seeing any incidences of such an easily preventable disease.

Spencer L. Brown, grandfather of a “kernicterus kid”

Next Article:

   Comments ()