Neonatal Jaundice - myths and midwife mistakes

Are you confused by neonatal jaundice? If so, you are probably not alone. This is because neonatal jaundice is often described as a common condition which is usually harmless and resolves in a few days, but also as a potentially dangerous condition which can cause ‘kernicterus’ brain damage to the newborn baby.  Both descriptions are correct but with proper monitoring and treatment, no newborn baby should ever be allowed to develop kernicterus. Neonatal jaundice is treatable and kernicterus brain injury is dangerous, but with proper medical care it is preventable.  

In 2018, the NHS’s defence organisation, NHS Resolution, reviewed 20 claims it had handled between 2001 and 2011 arising from serious injury suffered by babies from medical negligence in treating neonatal jaundice. Kernicterus brain injury is devastating and leaves a child with severe, lifelong disability. Did You Know? Neonatal Jaundice, NHS Resolution estimated the total cost of compensating the 20 cases it reviewed at £150,500,000. (£150.5m)

Myths and mistakes in treating neonatal jaundice

The review highlighted key themes and misunderstandings which featured in the care given to the babies who were left with severe injury needing compensation. These included midwives incorrectly reassuring parents or advising parents that their baby’s jaundice could be treated by placing them in the sun, delays in readmitting a baby to hospital or admitting them to the neonatal intensive care unit (NICU), delays in starting treatment and failing to diagnose other related conditions during the pregnancy, such as Rhesus incompatibility (mismatch between the mother’s and baby’s blood group).  Nearly ten years later, we are saddened to see that similar mistakes still feature in the negligent neonatal jaundice care given to our severely injured clients.  

Myth 1: All newborn babies have jaundice – it is normal

Neonatal jaundice is very common in newborn babies, particularly those that are premature, but not all babies develop the condition. 60% of babies born at full term and 80% of premature babies show signs of jaundice during the first few days of life. These signs include:

• Yellow discolouration of the baby’s skin;
• Yellow discolouration of the whites of their eyes;
• Dark staining of their urine which is visible on their nappy;
• Pale, chalky stools (poo).

Breastfed babies are at greater risk of developing neonatal jaundice.

Babies with signs of jaundice must be diagnosed, monitored and treated quickly if it doesn’t resolve to avoid serious, permanent injury.

Myth 2: Neonatal jaundice was passed from mother to child

Neonatal jaundice is caused by excessive bilirubin levels in the baby’s blood.  It is not caused by the mother’s diet or behaviour in pregnancy.  

Some family-related or hereditary conditions can lead to jaundice, such as Rhesus incompatibility, where the mother and baby have incompatible blood groups. This should be detected in pregnancy and appropriate treatment given to safeguard the baby. Other hereditary conditions which can cause jaundice include sickle cell anaemia or cystic fibrosis. It can also be caused by infection.

Where the mother’s previous child (the baby’s older sibling) needed phototherapy for neonatal jaundice, the current baby is at greater risk of jaundice.

Myth 3: Neonatal jaundice is harmless

Neonatal jaundice is usually harmless but it must be diagnosed, monitored and treated with phototherapy or an exchange transfusion if it doesn’t resolve early. This is because prolonged or severe untreated jaundice can develop into more serious conditions.

At Boyes Turner we have acted for many clients who developed a pattern of brain damage known as kernicterus when their neonatal jaundice was not properly treated.  These children now have lifelong disability from cerebral palsy, learning disability and hearing loss.

Neonatal jaundice is caused when the baby has excessive levels of bilirubin in their blood (known as hyperbilirubinaemia). Bilirubin is a yellow pigment that is released into the bloodstream during the body’s normal process of breaking down old red blood cells.  Bilirubin is processed in the liver and then stored in the bile duct and gallbladder. It helps the body digest fats in the small intestine (as bile), and is then excreted with the rest of the body’s waste. If the baby’s liver is struggling to process all the bilirubin in the baby’s bloodstream, the excess, unprocessed bilirubin causes irreversible damage to the brain and spinal cord, causing permanent neurological disability. This is known as bilirubin encephalopathy. The pattern of damage and its characteristic yellow staining of the brain is known as kernicterus.

Kernicterus brain damage is preventable. It occurs when the baby’s bilirubin levels have been allowed to rise to dangerous levels through inadequate monitoring or delayed treatment of hyperbilirubinaemia.

Signs of neonatal jaundice may also indicate that the baby is suffering from other conditions which may need treatment, such as:

• Infection or sepsis;
• Liver disease;
• Incompatibility between the mother’s and the baby’s blood groups (Rhesus incompatibility);
• Bruising and metabolic disorders;
• Sickle cell anaemia;
• Enzyme deficiencies.

Myth 4: Neonatal jaundice will resolve with time

Neonatal jaundice usually resolves within two weeks and may take a little longer if the baby is breastfed, but it is essential that the condition is recognised, diagnosed, properly monitored, and treated if the baby’s bilirubin levels reach the threshold level for treatment or are rising at a rapid rate towards the threshold.

Myth 5: Any kind of light will treat jaundice

NHS Resolution’s review of neonatal jaundice-related claims gave examples of midwives incorrectly advising parents to put their jaundiced baby in the sunlight to treat their condition.  The national guideline, NICE Guideline CG98, which sets out the standard of care expected for the treatment of jaundice in newborn babies under 28 days, specifically states that sunlight should not be used as a treatment for neonatal jaundice.

Babies with high levels of bilirubin need phototherapy in hospital with appropriate monitoring. Phototherapy involves exposing the baby to a special type of light which helps break down and remove the excess bilirubin. The baby’s eyes are protected and parents can still enjoy cuddles with their baby during the treatment.  Phototherapy is usually effective but if the baby’s bilirubin remains dangerously high, they may need an exchange blood transfusion to avoid damage to their brain.

Sunlight is not an effective treatment and also carries the risk of dehydration (making the condition worse) and sunburn to the newborn baby’s sensitive skin.

Myth 6: Kernicterus is a rare complication of jaundice, so we can’t claim compensation for our child’s brain injury

Failure to diagnose jaundice or properly monitor bilirubin levels, delays in admitting or readmitting a discharged baby to hospital/NICU and delays in phototherapy or exchange transfusion treatment are all negligent care. So is falsely reassuring parents or failing to advise them to seek urgent medical help if the baby’s condition doesn’t resolve or deteriorates. Mistakes such as these can lead to delays in essential treatment and severe brain injury and permanent disability from kernicterus. 

Where this occurs, the child’s family should seek help from specialist solicitors with expertise in kernicterus brain injury as the child is entitled to claim significant compensation.

We have helped children affected by kernicterus recover early interim payments and substantial compensation including costs of lifelong care and case management, adapted accommodation, education, therapies and medical costs, specialist equipment, assistive technology and transport, along with loss of earnings and other financial losses.

If you are caring for a child with cerebral palsy or neurological injury from kernicterus, and would like to find out how we can help you make a claim, contact the team by email at cerebralpalsy@boyesturner.com and find out if you have a claim.