Hyperbilirubinemia and Kernicterus

Hyperbilirubinemia is the medical term that means there is an abnormally high level of bilirubin in a newborn baby’s blood. One symptom of excess bilirubin is jaundice in newborns. Jaundice refers to the yellow pigment of the baby’s skin and eyes. When not carefully watched and treated, high levels of bilirubin can become severe enough to cause a form of brain damage known as kernicterus.

The dilemma is that kernicterus is highly preventable, yet it still occurs. It is likely that most doctors, clinicians and nurses have never dealt with a case of kernicterus. It is our hope they never will.

Hyperbilirubinemia Must Always be Detected and Treated

We stand behind parents we have worked with who must now live with the realities of kernicterus. They know in hindsight that to prevent kernicterus, aggressive protocols must be followed in the neonatal unit and after discharge – steps which were not taken in their case. We hope to give a powerful voice to these families and others, by speaking on their behalf against powerful interests that control their children’s safety and well-being including hospitals, doctors and insurance companies.

The American Academy of Pediatrics (AAP) has issued guidelines for hospitals and medical personnel to follow. The guidelines focus on ways to prevent severe hyperbilirubinemia from happening in the first place. Their recommendations suggest that if health care personnel follow their systematic guidelines, kernicterus can be avoided.

Additionally, The Joint Commission issued a Sentinel Event Alert recommending that all hospitals and health care professionals caring for newborn infants both inside the hospital and after discharge from the hospital observe AAP’s recommendations of management of severe jaundice and prevention of kernicterus.

As new or expecting parents, it is quite important that you are aware of what the AAP has to say.

Guidelines for Managing Hyperbilirubinemia in Newborns

The following are the main points recommended in the AAP guidelines. Hospitals, neonatologists, pediatricians, family physicians, and clinicians should:

  1. Talk with the mothers to make sure they understand the necessity for successful breastfeeding once they leave the hospital. New moms should nurse their babies at least 8 to 12 times a day for the first several days. Poor or insufficient breastfeeding can result in dehydration or low caloric intake, possibly leading to the development of hyperbilirubinemia.
  2. Establish protocols to be followed by hospital nursery staff for the identification and evaluation of high bilirubin levels. This includes systematic blood typing and screening of the mother.
  3. On babies who are jaundiced in the first 24 hours of life, measure the total serum bilirubin (TSB) or transcutaneous bilirubin (TcB) level. 
    Know that visual evaluation of the degree of jaundice is an estimate. Relying on visual appraisal can lead to errors, especially in babies with darker skin tones.
  4. Interpret all bilirubin levels according to the infant’s age in hours.
  5. Be aware that babies at less than 38 weeks’ gestation, especially babies who are breastfed, are at higher risk of developing hyperbilirubinemia and require closer, continual observation and monitoring.
  6. All newborns must be systematically screened and monitored for jaundice and the risk of severe jaundice before they are discharged from the hospital.
  7. Provide parents with written and verbal information about newborn jaundice. This should include an explanation of jaundice, the need to watch their babies for signs of jaundice, and clear instructions on how to monitor their child after they leave the hospital.
  8. Provide appropriate follow-up based on the time of discharge and the risk assessment. All babies must be examined by a qualified health care professional in the first few days after discharge.
  9. When indicated, promptly treat newborns with phototherapy or exchange transfusion.

When Hyperbilirubinemia Leads to Preventable Harm

Considering the severity and consequences of kernicterus brain damage, the AAP guidelines are not asking for extreme measures. The one underlying factor that will ultimately prevent kernicterus brain damage from happening is that health professionals must be prepared for this event and must act with great urgency to treat newborn jaundice and hyperbilirubinemia.

It has been our experience that parents are not warned about the risks associated with neonatal jaundice. For all parents-to-be, we encourage you to use the information here and follow up by talking with your obstetrician and pediatrician about screening and monitoring your baby for hyperbilirubinemia. Is your neonatal unit set up to treat it?

If you are a parent of a child with kernicterus, you have countless questions and worries about your child’s comfort, abilities, happiness and future. Ratzan Law Group’s hopes are to provide answers to you and to be of tremendous support. If you find our site helpful, please share it with others.

In almost all cases, kernicterus birth injury is considered medically preventable. We believe in seeking and speaking the truth about this preventable birth injury, and devote each day to helping families obtain justice when the negligence of medical professionals devastates their children’s lives.

Kernicterus Information Center