Brain Injury from Jaundice (Kernicterus)
A serious but fortunately uncommon type of birth-related injury occurs when a newborn has jaundice and does not receive adequate, prompt treatment to lower the blood levels of the substance that causes it: bilirubin.
Bilirubin makes the skin look yellow or even pumpkin-colored when the amount of bilirubin in the blood is too high. Bilirubin is a bile pigment produced as the body uses red blood cells. The process is a normal part of blood regeneration, but if the bilirubin does not leave the body through normal elimination, it is toxic. If the excessive bilirubin level in a newborn is not lowered promptly, it can invade brain tissue and the brain can be permanently damaged. This damage is called kernicterus.
According to the National Institute of Health (http://www.nlm.nih.gov/medlineplus/ency/article/007309.htm), kernicterus most often develops in the first week of life, but it can occur until the third week.
If a baby suffers brain injury when physicians do not take newborn jaundice seriously enough, or if the doctors fail for some reason to treat it aggressively, most experts consider that to be medical malpractice. In this case, a legal consultation with an attorney may be a good idea.
As a product of the liver that’s excreted in bile as part of normal organ function, bilirubin is common to all humans. It causes the skin and whites of the eyes to yellow if its blood levels are too high. A blood test measures how much bilirubin is circulating in the blood. People with liver disease or whose bile ducts are blocked often have elevated levels.
During pregnancy, a woman’s liver removes bilirubin for the fetus, but after birth, the baby’s liver takes over this function. But some babies might not have fully developed liver function. If their livers don’t flush out excess bilirubin, the baby becomes jaundiced.
By the time signs of acute kernicterus appear (see “symptoms” below), brain damage is occurring. Immediate treatment can prevent further damage, and sometimes it might be able to reverse damage that has occurred.
Before you take your newborn home, ask your medical team if he or she should be tested for jaundice. A doctor or nurse can check the baby’s bilirubin with a light meter placed on his or her head. That produces a number for transcutaneous bilirubin (TcB), and if it’s high, a blood test should be ordered.
That gives the most accurate measure of bilirubin, and is done by taking a small blood sample from the baby’s heel. Taking into consideration the baby’s age in hours and other risk factors (see below), if the total serum bilirubin (TSB) level is high, he or she should receive treatment in the form of light therapy (more about that later). As treatment occurs, blood samples should continue to be taken to ensure that the TSB is decreasing.
Usually, bilirubin levels are highest when the baby is 3 to 5 days old. So babies should be checked for jaundice every 8 to 12 hours in the first 48 hours of life and again before they’re 5 days old.
After discharge from the hospital, the most common reason bilirubin levels rise dangerously is because the baby isn’t eating sufficiently to flush them out through elimination.
According to the Centers for Disease Control and Prevention [http://www.cdc.gov/ncbddd/jaundice/facts.html ] CDC, about 6 in 10 babies have jaundice. So it’s common, usually not serious and generally treated successfully with phototherapy (see below). But some babies are likelier to have severe jaundice and higher bilirubin levels than others, and they should be monitored more closely for early jaundice management. They are:
Preterm babies. Babies born before 37 weeks, or 8.5 months, of pregnancy might have jaundice because their liver is not developed fully and might not be efficient at processing bilirubin.
Babies with darker skin color. It’s easier to miss the yellow/orange cast that signifies jaundice in a baby with dark skin. Their gums and inner lips should be examined for their color. If there’s any doubt, a bilirubin blood test should be done.
Babies of East Asian or Mediterranean descent. People with these family backgrounds are at higher risk of becoming jaundiced. Also, some families inherit conditions (such as G6PD deficiency; G6PD is an enzyme that protects red blood cells), and their babies are likelier to get jaundice.
Babies with feeding difficulties.A newborn who does not eat well, and whose diapers are unusually clean or dry is likelier to get jaundice.
Babies who have a sibling with jaundice. A baby with a sister or brother who had jaundice is likelier to develop it as well.
Babies who bruise. Bruises occur when blood leaks out of a blood vessel, discoloring the skin black and blue. A baby with bruises at birth is likelier to get jaundice because the bruise healing process causes elevated levels of bilirubin.
Babies whose mothers have certain blood types. Women with an O blood type or Rh negative blood factor might have babies with higher bilirubin levels. A mother with Rh incompatibility should be given an injection of RhoGAM, the brand name of a gamma globulin drug that prevents the formation of antibodies if you have this condition, which generally is known long before giving birth.
Why Jaundice is Dangerous
Elevated levels of bilirubin in the central nervous system are toxic. This is when “jaundice” becomes “kernicterus,” which can cause serious injury including deafness, cerebral palsy and mental disability. It also can cause problems with vision and teeth. And without treatment, or if treatment is given too late, the baby can die.
Symptoms of Jaundice
According to the CDC, jaundice in a newborn usually appears first on the face, then the chest, belly, arms and legs as bilirubin levels rise. The whites of the eyes also can look yellow.
This color signal can be more difficult to see in babies with darker skin color. A blood test, of course, shows how much bilirubin is in the baby’s blood.
If you see any of these symptoms, contact your pediatrician immediately. The baby:
- is difficult to wake up or will not sleep at all;
- is not breastfeeding or sucking from a bottle well;
- is often or uncharacteristically fussy;
- lacks a startle reflex (that is, doesn’t respond to sudden noise, touch, etc.);
- has unusually dry or clean diapers.
Get emergency medical help if your baby:
- is crying uncontrollably or with a high pitch;
- is arched like a bow (the head or neck and heels are bent backward and the body forward);
- has a stiff (“hypertonic”) or, alternately, limp or floppy body (“hypotonic”);
- has strange eye movements;
- is having seizures.
“No baby should develop brain damage from untreated jaundice,” states the CDC.
Indeed, this is about simple, good newborn baby care. That’s why the people and facilities responsible for untreated jaundice that results in brain and other injuries should be held accountable. It’s what we call a “never event” — a medical error that is not the result of understandable confusion, surprise or excusable problems, but one that never should have happened.
Treating high bilirubin levels involves putting the baby under special lights in which the blue light spectrum turns the toxic bilirubin into a water soluble substance that is eliminated through urination and defecation. This does not hurt the child the way exposure to sunlight can cause sunburn. Light therapy can be done in the hospital or at home; sunlight is not appropriate.
Because not eating or drinking enough boosts bilirubin levels, the jaundiced baby also will be hydrated (given fluids intravenously) and fed formula through a tube.
In some serious cases, or if phototherapy is not successful in reducing the high bilirubin levels, a doctor performs a blood exchange transfusion. Jaundice should be treated before brain damage is a concern. By the time a baby requires a transfusion, damage has occurred.
Follow-up care is important. Make sure your baby is getting enough to eat. If you breastfeed, nurse the baby at least 8 to 12 times a day for the first few days. That helps you make enough milk for feeding, which in turn helps lower the baby’s bilirubin levels. When the body removes waste efficiently, it’s also removing excess bilirubin.
If you are having trouble breastfeeding, ask your care team for assistance. Many maternity units have lactation coaches.
Make sure that the medical caregivers pay sufficient attention to your child’s excessive bilirubin levels.
Do not allow a delay in treatment if the providers question the lab’s bilirubin value and want to repeat it before starting treatment. A repeat test is fine; not addressing the problem suggested by the first test is not. There is no risk with phototherapy, hydration, tube feeding and ordering tests for blood type, but there is if the baby is jaundiced and you wait.
Even if a baby requires testing to determine the need for blood exchange, generally it can be done under the lights or with only minimal interruption. If it’s indicated for your baby, make sure the caregivers keep him or her surrounded by the lights at every possible moment.
Ensure proper measure of bilirubin levels. Monitor the lab results to ensure that total serum bilirubin (TSB) has been measured. If you can’t figure out the lab report, ask for interpretation.
Make sure the bilirubin was measured in comparison to hour-specific norms. These levels vary significantly according to how old a newborn is, in terms of hours. For example, a dangerously high value for a baby 24 hours old is low risk if he or she is 47 hours old.
The CDC website has a lot of information about jaundice, and kernicterus. Link here [http://www.cdc.gov/ncbddd/jaundice/freematerials.html ] for its fact sheet with information about the cause, signs and treatment of jaundice, and for an interactive brochure with space for parents to record notes about possible risks before baby is born, while he or she is in the hospital and during the first few days at home. The brochure also provides a tool for how parents should talk with their health-care provider about jaundice.
Parents of Infants and Children with Kernicterus [http://pic-k.org/ ] (PICK), is a parent-run nonprofit organization dedicated to education and prevention of kernicterus. It also offers support for afflicted families, and information about ongoing research.
If a family member has suffered a serious, permanent injury related to childbirth, you may want to talk to a lawyer. We provide free consultations to help determine if you have a valid medical negligence case that should be pursued. If you have already consulted with another lawyer or are in the process of doing so, we can help you evaluate whether you have obtained the right lawyer for your case.
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