When a baby is born, there is so much to take in. The first cry, the first feeding, the first time you hold them and feel like the world has completely changed. In the middle of all of that joy, it can be easy to brush off something the doctor mentions in passing, something like newborn jaundice. After all, you might hear that it is common, that it usually goes away on its own, and that there is nothing to worry about. And in many cases, that is true.
But what most parents are never told is that newborn jaundice can sometimes become something far more serious. Knowing when it is harmless and when it is a medical emergency could be one of the most important things you ever learn as a parent.
This is exactly why the G6PD Deficiency Foundation exists. Because what happened to Brody did not have to happen, and it does not have to happen to another family.
What Is Newborn Jaundice?
Newborn jaundice is the term used to describe the yellowing of a baby’s skin and eyes. It happens because of a buildup of bilirubin in the blood. Bilirubin is a yellow substance produced naturally when red blood cells break down. In adults, the liver processes bilirubin and removes it from the body efficiently. In newborns, however, the liver is still developing and cannot always keep up with the amount of bilirubin being produced.
Eighty percent or more of newborns develop some degree of mild jaundice in their first week or two of life. In the majority of cases, this resolves on its own without any intervention as the liver matures and catches up. This is known as physiologic jaundice, and it is considered a normal part of the newborn period. Total serum bilirubin levels typically remain below 10 mg/dL and return to normal levels by around the fourteenth day after birth.
So yes, newborn jaundice is common. But common does not always mean harmless, and that distinction matters.
When Does Newborn Jaundice Become Dangerous?
The problem begins when bilirubin levels rise too high and are left unchecked. When total serum bilirubin climbs above 20 mg/dL, it is generally considered to signal hyperbilirubinemia, a condition where bilirubin has reached dangerous concentrations in the blood. In severe cases, bilirubin levels can rise as high as 45 mg/dL.
At those elevated levels, bilirubin becomes toxic to the brain and nervous tissue. It can begin to cross the blood-brain barrier and cause a condition called Acute Bilirubin Encephalopathy. If left untreated, this can progress to permanent brain damage, a condition known as Kernicterus, or in the most devastating cases, it can be fatal.
This is not a rare or far-fetched scenario. It is exactly what happened to Brody.
Brody was born healthy. He became jaundiced shortly after birth, which his family was reassured was normal. He was treated with phototherapy, his bilirubin levels came down, and he was sent home. But within days, things changed. He became lethargic, stopped feeding well, and his parents noticed something was wrong. When they took him to his pediatrician, they were sent home again and told not to worry. The next day, Brody was rushed to a Neonatal Intensive Care Unit with toxic levels of bilirubin in his blood. He was diagnosed with Kernicterus, a type of brain damage caused by severe jaundice that was not properly managed. The brain damage Brody sustained affects his motor skills to this day. His family had never been told how dangerous newborn jaundice could become, and they had never heard of G6PD deficiency.
That is the story behind this foundation, and that story does not have to keep repeating itself.
The Warning Signs Every Parent Should Know
One of the most important things parents can learn is how newborn jaundice progresses physically. Jaundice typically begins in the face and eyes, appearing as a yellowing of the skin and whites of the eyes. As bilirubin levels rise, that yellowing travels downward through the body.
When jaundice spreads below the abdomen, that is a sign that something is becoming urgent. It should never be brushed off or monitored casually at home at that stage. A simple blood test can confirm a baby’s bilirubin level quickly, and if levels are high, treatment can and should begin immediately.
Beyond the visible yellowing, severe newborn jaundice caused by hyperbilirubinemia can also present with the following signs:
- Fever
- Extreme sleepiness or lethargy that is difficult to rouse the baby from
- High-pitched crying
- Loss of appetite
- Changes in muscle tone, either too rigid or too floppy
- Arching of the back
- Seizures or convulsions
- Urine that is darker than normal, which can also be a sign of hemolysis
Any of these signs in a newborn, especially when combined with visible jaundice, should be treated as an urgent situation. The G6PD Deficiency Foundation is clear: neonatal presentation with any of these abnormal signs is a cause for immediate concern and warrants an urgent visit to a physician or emergency room. Phototherapy is the standard treatment; it is non-invasive, does not harm the baby, and can be stopped at any point. Getting treatment started quickly is what matters.
What Does G6PD Deficiency Have to Do With Newborn Jaundice?
This is the part that most parents, and even many healthcare providers, are never taught.
G6PD deficiency is a hereditary enzyme disorder and one of the most common genetic deficiencies in the world. G6PD is an enzyme that the body needs to protect red blood cells from breaking down prematurely. When a person lacks sufficient G6PD, their red blood cells are more vulnerable to destruction, a process called hemolysis. When red blood cells break down, they release bilirubin.
In a baby who is already experiencing newborn jaundice, G6PD deficiency can cause bilirubin levels to rise much faster and much higher than they would in a baby without the deficiency. The connection is direct and well-established. Among infants who develop severe hyperbilirubinemia or go on to develop Kernicterus, there is a disproportionate number with G6PD deficiency, with some studies showing it accounts for 20 to 30 percent of readmissions for hyperbilirubinemia. Thirty percent of newborns readmitted for hyperbilirubinemia are found to have G6PD deficiency.
Brody’s case was a convergence of several risk factors. He was born two weeks early, he developed newborn jaundice, and he had G6PD deficiency. None of these alone necessarily would have led to the outcome his family experienced, but together the story is much different.
And while not every baby with G6PD deficiency will experience severe jaundice, the fact that so many families and doctors are unaware of the connection means that too many babies are not being monitored carefully enough when they should be.
Why G6PD Deficiency Changes Everything About Managing Newborn Jaundice
When a baby has G6PD deficiency and develops newborn jaundice, the situation requires a heightened level of attention. Certain exposures can trigger a hemolytic crisis in infants with this condition, including infections, certain drugs, and exposure to substances like mothballs or henna. Any of these, layered on top of normal newborn jaundice, can cause bilirubin to rise rapidly.
G6PD deficiency is hereditary, which means it runs in families. If there is any family history of G6PD deficiency, neonatal jaundice, or hyperbilirubinemia, we strongly suggest parents inform their baby’s doctor immediately. This information is critical for how closely the baby’s bilirubin levels should be monitored and how quickly treatment should begin if levels rise.
If initial testing shows elevated bilirubin in a baby, the foundation advises requesting that treatment begin right away, even while waiting for follow-up test results. The phototherapy used to treat hyperbilirubinemia is safe and effective, and starting it sooner rather than later is always the better choice when there is any reason for concern.
What Parents Can Do Right Now
You do not need to be a medical professional to be an informed advocate for your newborn. Here is what matters most.
Pay attention to where the yellowing is on your baby’s body. Jaundice that stays in the face and eyes is being watched and managed appropriately in most hospital settings. Jaundice that travels into the chest, abdomen, or lower body is a signal that bilirubin may be rising to a level that needs immediate attention.
Know your family history. If anyone in your family has G6PD deficiency, or if there is a history of severe newborn jaundice, make sure your baby’s care team knows before or at the time of delivery. This is information that can shape how your baby is monitored from the very first hours of life.
Trust your instincts. Brody’s parents knew something was wrong. They brought him to a doctor, were reassured, went home, and brought him back the next day when their instincts told them something had changed. When a newborn becomes extremely sleepy, stops feeding, cries in a high-pitched tone, or shows any of the warning signs listed above, do not wait and see. Go to an emergency room and ask for a bilirubin blood test.
Ask about G6PD screening. Newborn screening practices vary by state and by hospital. Not every baby is routinely screened for G6PD deficiency, even though the deficiency affects close to 400 million people globally. In the USA, close to 2.3% of newborns are G6PD deficient. If you have reason to believe your baby may have the deficiency, ask specifically about testing.
A Story That Does Not Have to Repeat Itself
Brody is now a young boy living with the effects of Kernicterus, a brain damage that was preventable. His grandmother, Keely Harris, founded the G6PD Deficiency Foundation specifically so that other families would have the information hers never did. The foundation’s mission is education, awareness, and screening, because none of these outcomes are inevitable when parents and providers have the knowledge they need.
Newborn jaundice is common. But the version of it that goes unmonitored, that escalates quietly while a family is reassured everything is fine, that intersects with an undiagnosed hereditary enzyme disorder that nobody told them about, that version is not harmless. It changes lives.
The G6PD Deficiency Foundation wants every parent to walk out of the hospital knowing what to watch for, knowing the warning signs of severe newborn jaundice, and knowing that G6PD deficiency is a real and significant factor in how that jaundice can progress.
Awareness, shared early enough, is the difference that matters.
Learn More and Get Involved
If you would like to learn more about newborn jaundice, G6PD deficiency, and what you can do to protect your family, visit our full Newborn Jaundice Resource page.
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This story does not have to happen to another family, and we’d love your help to make sure it doesn’t.
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