There is a very good reason to monitor and treat newborn jaundice.
It’s called Kernicterus (KSD).
No one is born with KI. This preventable malady can occur when jaundice (hyperbilirubinemia) is mismanaged in the first days or weeks of life. Athetoid cerebral palsy, auditory neuropathy, cortical visual impairment, dental enamel hypoplasia, and gaze abnormalities are the common neurological sequelae. In 2001, the National Quality Forum issued a “Never Event” ranking kernicterus among 27 medical errors that should never happen.
The word kernicterus comes from the root “kern,” meaning core and “icterus,” meaning yellow. When bilirubin reaches a toxic level it crosses the blood-brain barrier in an infant and literally stains a certain part of the brain (the globus pallidus in the basal ganglia) yellow, causing the irreparable damage known as kernicterus, or KSD, Kernicterus Spectrum Disorder.
The bilirubin level at which this occurs is not a magic number. The amount of bilirubin that is safe in an infant is determined by physicians based upon the infant’s gestational age, general health, and risk factors, thus we strongly advocate for screening of newborns to best identify those at risk.
With proper testing, screening and treatment kernicterus is a preventable malady.
Individuals living with kernicterus are affected to varying degrees. Some live with mild hearing loss, behavioral challenges, and/or clumsiness while other might be mistaken for someone with spastic quadriplegia. Kernicterus is a spectrum.
An otherwise healthy infant that suffers this injury can suddenly have an altered future, a future that can include impairments to vision, hearing, movement, digestion…essentially every area of life – the ability to interact with others and care for self.
For lack of one blood test, a child’s future can change.
Jaundice can do that.
Kernicterus can include all or some of the following (remember, it’s a spectrum):
IF NEWBORN JAUNDICE IS LEFT UNTREATED IT CAN CAUSE KERNICTERUS.
Help spread the word. Make sure every child gets a TEST! Make sure your hospital and doctors educate parents with these materials: http://www.cdc.gov/ncbddd/jaundice/freematerials.html .
Has your child been diagnosed? GET ON THE MAP.
Awareness is the precursor to change!!!
Do you have a child who has been diagnosed with kernicterus? Or do you yourself have kernicterus? Stand up and be counted. http://www.diseasemaps.org/en/kernicterus/Also, be sure to join our family group: Affected by Kernicterus.