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NEWBORN JAUNDICE ALERT
OVERVIEW
WHAT IS KERNICTERUS?
WHO IS AT RISK?
WHAT ARE THE WARNING SIGNS?
WHAT SHOULD YOU DO IF YOU THINK
YOUR BABY IS AT RISK?
OVERVIEW
As a parent, you should know that José Cordero, Director of the CDC's National Center on Birth Defects and Developmental Disabilities, calls kernicterus "an emerging public health threat to newborns." The NCBDDD, with PICK and Pennsylvania Hospital, will launch a national awareness campaign on kernicterus this fall.
Many pediatricians have never seen a case of kernicterus. That's why it is especially important that you, as a parent, know what to look for and what to do if your baby begins to show signs of developing kernicterus.
WHAT IS KERNICTERUS?
Kernicterus is a preventable brain injury that involves permanent brain damage and other complications that may include cerebral palsy, auditory neuropathy, gaze abnormalities and dental enamel hypoplasia. Kernicterus results from elevated levels of a naturally occurring neurotoxin, bilirubin. Early detection and treatment of hyperbilirubinemia is critical for prevention of kernicterus.
In plain English, kernicterus traps bright, beautiful children in bodies they can't control and that, in some cases, don't even work. Some children become quadriplegic. Many cannot walk. Some can't talk, or can with great difficulty. Others develop the most severe form of cerebral palsy. Some have hearing problems. Many have problems with vision or their teeth. Kernicterus changes the trajectory of the lives it touches. And the tragedy is, kernicterus is preventable.
Kernicterus used to be common in the United States. In fact, in the 1950s, it was the second leading cause of cerebral palsy. By the 1970s, the medical community believed kernicterus had been eliminated, although it continued to occur outside the U.S., principally in underdeveloped countries. But times have changed. Babies are being discharged earlier and therefore may not be under the watchful eye of someone who knows what to look for and what to do. And parents, for the most part, aren't warned about the risks associated with newborn jaundice. As a result, we are seeing a re-emergence of kernicterus.
WHO IS AT RISK?
All babies produce bilirubin and are at some risk for bilirubin toxicity if not well monitored and managed. Some babies are more susceptible to developing jaundice due to a variety of factors including ethnicity, genetic disorders, and perinatal circumstances. Babies of East Asian and Mediterranean descent have an increased vulnerability to jaundice, as do families with a history of Glucose-6-Phosphate Dehydrogenase (G6PD) deficiency. Babies who are premature, have signs of jaundice in the first 24 hours of life, bruising from delivery, undetected hemolysis or blood incompatibility, infection, and non-optimal sucking are at increased risk for severe jaundice.
WHAT ARE THE WARNING SIGNS?
The warning signs for kernicterus are recognizable and should be treated with urgency.
- Yellow or orange skin tones starting at the head and spreading to the toes
- Lethargy, constantly sleepy
- Weakness, limpness, floppiness
- Difficulty nursing and/or sucking
- High pitched cry
- Arching of the baby's body into a bow, with the head and feet angled toward the back and the torso arching forward
Sometimes mothers, especially new mothers, are told they should rejoice that their babies are quiet and sleeping all the time. They are sometimes told not to worry if the baby has a hard time nursing or sucking. However, these are serious signs that the baby may be in imminent danger of brain damage from hyperbilirubinemia. If the baby is very yellow, even orange, and that coloration is spreading from the baby's head towards its toes, you should be very concerned and get the baby to an emergency room immediately. By the time you hear your baby's high pitched cry or see it arching its body, it may be too late.
WHAT SHOULD YOU DO IF YOU THINK YOUR BABY IS AT RISK?
Take your baby to an emergency room and demand a bilirubin test. Time is of the essence. Bilirubin tends to peak on the fifth day after birth. Before the end of the baby's first week, high levels of bilirubin, commonly called hyperbilirubinemia, can cause permanent brain damage.
The doctor or nurse may tell you a test is unnecessary. Insist on this test. It is necessary, inexpensive and painless. Doctors and nurses have a choice of two tests. One is non-invasive. It involves placing a meter, something like an ear thermometer, to the baby's forehead. This transdermal method is very effective at measuring bilirubin. If the baby is very yellow or orange, the doctor should prick the baby's heel for a blood sample that will enable him or her to measure the baby's total serum bilirubin, or TSB.
The results of that test should be plotted on the nomogram, which will help you and the doctor to assess the baby's risk. If the bilirubin level is 15 or higher, the baby is at risk and should be placed under "bili lights."
Bili lights provide a special form of phototherapy that has the power to break down the bilirubin in your baby's blood. In more severe cases, an exchange transfusion may be performed. In this case, the baby's blood, which has become toxic from bilirubin, will be exchanged for blood that is safe. This is a very simple procedure and it may save your baby's life. Current AAP guidelines call for doctors to perform a visual assessment of a baby's risk for hyperbilirubinemia and kernicterus. This subjective, visual approach is especially problematic for babies of color. Moreover, as we know from the rise in kernicterus cases throughout the U.S., visual assessment doesn't always work. The only way to ensure that your baby will not be harmed by bilirubin is to have the baby's bilirubin level measured and plotted on the nomogram. This test is inexpensive, takes only minutes to perform, and can save your baby's life.
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