The majority (approximately 60%) of babies born in the United States have some degree of jaundice (yellowing of the skin, eyes and tissues). It is a scary word - jaundiced - but it is rarely a big deal. Jaundice usually goes away within a few days as the liver has a chance to clear the excessive bilirubin from the blood and the baby goes about normal development. Kernicterus is out of control jaundice.
Excessive jaundice, due to increased levels in the blood of a substance called bilirubin (hyperbilirubinemia), can lead to a rare disease known as kernicterus. Infants showing signs of brain dysfunction due to increased bilirubin require immediate treatment in order to prevent/minimize brain damage. Kernicterus means that there is too much bilirubin in the blood. Properly treated, kernicterus can usually be handled. Untreated, kernicterus can cause permanent brain damage.Symptoms
Signs of acute bilirubin toxicity include:
- sleepiness and difficulty to arouse
- lack of wet diapers
- not feeding well
- high pitched cries and decreased muscle tone with episodes of increased muscle tone causing backward arching of the back and head
- generally fussy
Fevers may develop as the damage progresses. Feedings often decrease leading to the dehydration of the infant, further exacerbating symptoms.Risk Factors
Every child has a risk of kernicterus. Modern medicine does not have a great lens into why some infants get excessive jaundice and why some do not. But we do have some clues. Factors that may lead to increases in bilirubin in the blood and in turn jaundice, include blood group incompatibilities between mother and infant, prematurity, bruising (e.g. cephalohematomas and bleeding under the skin of the scalp (caputs), infection, ethnicity (east Asian or Mediterranean descent), siblings with jaundice at birth, genetic factors (ie. deficiency in glucose-6-phosphate dehydrogenase) and non-optimal suckling/feeding.Treatment
Treatment for this problem includes phototherapy with bilirubin lights, hydration with fluids and preparation of the infant for possible blood transfusion. Feedings should occur every one to three hours to ensure urination and defecation in order to aid in removal of bilirubin from the body. The course of treatment should be immediate for any suspect cases and should not be delayed awaiting further testing. Kernicterus is a preventable disorder if symptoms are recognized early and treated immediately. Delays in diagnosis/treatment have severe consequences in infants with kernicterus. Infants affected typically require physical and speech therapy and special education.Current Efforts
There has been - and there will continue to be - progress in both treating Kernicterus related birth injuries and in implementing guidelines to prevent kernicterus by detecting newborns with jaundice and providing appropriate treatment.Medical Malpractice and Kernicterus
What is maddening is that this tragedy can always be avoided if doctors, nurses and hospitals do the right thing. Even without bilirubin screening, there are lots of steps that can be taken to prevent this disaster. Nurses and doctors need to remember to examine the newborn for jaundice and be able to distinguish visually between mild jaundice and clinically significant jaundice, based on the infant's age in hours and the need to evaluate risk factors and if warranted, assess bilirubin levels, appropriately treat and follow-up. As nurseries are often busy, it is plausible that not all things may be done correctly or under optimal conditions.
The following list includes some of the most common, preventable, mistakes made by physicians:
- Not treating the child immediately following initial bilirubin results. Like most health conditions, the faster you catch kernicterus the better. Sure, retest the child if you like. But don't let that delay treatment. The cost of waiting can be a lifetime of neurological problems for the child.
- Waiting to treat or interruption of phototherapy in order to determine risk of a blood transfusion. If tests are required in order to prepare the infant for transfusion, all tests should be done under phototherapy lights. Again, delay can lead to lifelong injury.
- Not properly examining the infant for signs of kernicterus or the symptoms discussed above. They are not flashing light emergency symptoms but a reasonable doctor should catch them.
- Failing to properly appreciate the test results. Total serum bilirubin is specific to the age - in hours - of the child. It is important that bilirubin be measured and compared to specific norms by hour. For example, blood work from a one-day old infant may be found to be normal or high depending if the newborn is 24 hours or 47 hours old. A level of 8.5 is considered high risk in a 24 hour old baby and low risk for a 47 hour old baby. Doctors sometimes interpret a test that should be cause for alarm as perfectly normal while the bilirubin levels continue to rise.
If your precious child was injured from kernicterus, you may be able to receive compensation from a medical malpractice lawsuit against the doctors and hospital who treated your child. If you want to investigate your potential birth injury medical malpractice claim, call us at 800-553-8082 or get a free online consultation.