A newborn with severe jaundice can develop a type of brain injury called kernicterus.
Jaundice develops from the accumulation of bilirubin in the bloodstream. If left untreated, bilirubin can accumulate to dangerous levels and spread into the brain resulting in permanent brain damage.
Kernicterus is preventable by carefully monitoring newborn babies and treating those with elevated levels of bilirubin.
What are Jaundice, Hyperbilirubinemia and Kernicterus?
Jaundice is very common, occurring in over 50% of newborns. Jaundice occurs with the accumulation of bilirubin, a byproduct of the breakdown of red blood cells due to the newborn’s liver not being able to process the bilirubin effectively.
Newborns and infants are not easily able to flush out the bilirubin so that it can build in the baby’s body. Due to the colouring of the bilirubin, the baby’s skin or eye whites may become yellowish, which is a sign of jaundice.
When there are excessive or dangerous levels of bilirubin in a baby’s blood – that is called hyperbilirubinemia. The treatment for hyperbilirubinemia is phototherapy which alters the bilirubin from a toxic to non-toxic form that is easily eliminated by the newborn. If left untreated, hyperbilirubinemia can result in the newborn suffering a brain injury (called kernicterus).
Kernicterus, a brain injury caused by excessive bilirubin, is described by physicians as a “never event.” It is referred to as a never event not because it never happens, but because it should never happen. Kernicterus can cause problems with motor function, vision, hearing and can cause intellectual disabilities.
Signs of Jaundice and Hyperbilirubinemia
The main sign of jaundice is discoloring of the baby’s skin. The yellowish pigment appears first on the baby’s face and eyes, and then it may spread throughout the body. Jaundice is more challenging to detect in babies with darker skin color.
Signs that a baby may have excessive levels of bilirubin in their blood include an abnormal high-pitched cry, abnormal muscle tone like either being stiff and jerky, arching backwards, or conversely being weak and floppy, being lethargic, difficult to wake up and/or not not feeding well. If you have any concerns about your child’s jaundice or behaviour it is important that you obtain medical attention for your child immediately.
Jaundice and Kernicterus Diagnosis for Infants
It is routine for all babies to get checked for jaundice after birth while still in the hospital. Jaundice within the first 224 hours of life is always worrisome. Additionally, the baby should also be checked for jaundice a second time between 3 to 5 days old. This is a critical time to determine if the baby has hyperbilirubinemia and needs treatment.
Early detection of hyperbilirubinemia can save a baby from developing long-lasting brain injuries. There are three main ways that doctors can test a baby’s bilirubin levels:
- A blood test, which is a small sample taken from the baby’s heel, is the best way to measure a baby’s bilirubin levels.
- The medical team will check a newborn’s body for signs of jaundice during a physical exam.
- Finally, a skin test (transcutaneous bilirubin test) is when a doctor or nurse places a device on a baby’s forehead to check bilirubin levels. This device can measure the skin for discoloration by using a special light.
Jaundice can peak around day 5 of an infant’s life. If a baby is showing any signs of jaundice, in the first few days after birth, then you’ll want to take the baby to a doctor.
How are Jaundice and Kernicterus Treated in Newborns and Infants?
Jaundice is relatively common in babies, and a mild case of jaundice can be treated with straightforward advice from a doctor. Often, a doctor will recommend working with a newborn baby on feeding (breastfeeding or formula). Feeding can help push bilirubin through the baby’s system faster.
For severe jaundice, a baby may need a more comprehensive treatment plan. Some common treatments for jaundice in infants are:
During this treatment, a baby is placed under a phototherapy treatment lamp. The light can help a baby’s body change the bilirubin to flush out as urine. This treatment is typically provided in the hospital.
This is a type of blood transfusion which provides rapid reduction in the amount of bilirubin circulating on the baby’s blood by replacing the baby’s blood with compatible donor blood.
The goal is to treat excessive levels of bilirubin before a brain injury can occur. Once kernicterus is diagnosed, brain damage has already occurred. While it is not uniform in every infant, kernicterus can cause the following lifelong damage:
- Movement problems where a child may develop slow and uncontrolled movements or random, jerky movements. This is known as athetosis and dystonia
- Hearing loss, deafness, or auditory processing issues like auditory neuropathy.
- Developmental and learning disabilities
- Eyes may move slowly, especially while looking upward.
- Dental issues that may weaken the enamel of baby teeth. This is known as dental hypoplasia.
Long-term interventions for brain damage caused by kernicterus will depend on a child’s specific problems. Typical treatment plans would include physiotherapy, occupational therapy, auditory verbal therapy, speech therapy, adaptive equipment,and special education programs.
Infants at Higher Risk for Jaundice
Some babies are at risk of having increased levels of bilirubin circulating in their blood.
Jaundice is most commonly found in preterm newborns (those born before 36 weeks gestation). A newborn with siblings who had severe hyperbilirubinemia is certainly at a higher risk of developing jaundice.
Blood type compatibility between the baby and the mother is a risk factor. Babies with an incompatible blood type can develop hyperbilirubinemia because antibodies in the blood can destroy red blood cells.
There are additional causes of jaundice that may be related to the process of labour and delivery like bruising at birth or developing an infection. There may be congenital factors such as enzyme deficiency or liver problems.
One final risk factor to look out for is for babies that aren’t drinking enough breastmilk or formula. A baby needs the additional fluid to help flush out the excess bilirubin in their system.
Can Kernicterus be Prevented?
Kernicterus is described as a never event because it is easy to test bilirubin levels by a blood sample from a heel prick and by way of a skin probe.
In 2004, the American Academy of Pediatrics published clinical practice guidelines on the management of hyperbilirubinemia, and in 2007, the Canadian Pediatric Society published its own guidelines for the Detection, Management, and Prevention of Hyperbilirubinemia.
Regrettably, despite these guidelines, brain injuries due to kernicterus still occur in Canada. These preventable injuries result when at-risk newborns are not identified and monitored appropriately in order to treat rising levels of bilirubin before they cause a brain injury.
How to Know When Newborn Jaundice Needs Treatment
Jaundice is common in newborns and does not always turn into a severe case. The most common sign of jaundice is a yellowish tint to the skin color. The initial treatments for jaundice would include supplemental feeding and phototherapy.
If the jaundice is severe and the baby is showing signs of lethargy, musical stiffness or arching their body, or crying with a high-pitched cry – then jaundice may have progressed into something much more serious. Brain damage may have already taken place at this point.
Can Newborn Jaundice Cause Serious Injury or Death?
Yes, if jaundice and hyperbilirubinemia are left untreated, it can turn into kernicterus and cause serious brain damage or even death in a newborn. Kernicterus can cause problems with movement, vision, teeth and can cause intellectual disabilities.
Jaundice is treatable and brain injury from kernicterus is preventable. There are many proven therapies for newborns and infants with jaundice that can help them.
Get Help for an Infant that has Preventable Brain Damage caused by Kernicterus
BILA is a team of birth injury lawyers in Canada who have experience navigating the complex issues and preventable damage that kernicterus can cause. Our goal is to educate parents to ensure that children suffering from preventable brain injuries get effective and experienced legal representation.
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