Seattle mom Jennifer Zwick and her husband Dan Dean knew “almost nothing” about newborn jaundice when their son, Owen, was born in 2010.
Almost nothing turned into a nightmare, starting with a missed diagnosis by their midwife just days after Owen’s birth, a rush to the Seattle Children’s Neonatal Intensive Care Unit (NICU), a warning from doctors that Owen might suffer brain damage or even die due to the high level of toxin in his body, and then, after the initial crisis passed, several days of home-based therapy.
While it is not usually a medical crisis if your newborn baby seems to look yellow or orange within the first three days after birth, this condition, called newborn jaundice, can be serious.
About 70 percent of newborns get a mild case of neonatal jaundice, or yellowing of a newborn’s skin and other tissues within the first few days of life, as their systems work to remove toxins built up in the liver while in utero. The yellow effect results when an infant’s level of bilirubin – a toxic red blood cell byproduct – rises to above 5 mg/dL. The yellowing is usually first noticed in the eyes and on the forehead and cheeks. As the bilirubin level rises, the yellowing moves down the body to the trunk, legs and arms. Levels above 20 mg/dL could lead to serious health issues, brain damage or even death. When Owen’s number was first reported, it was 28.
Luckily, the solution to jaundice for most infants is simple: eating and pooping. As the baby receives liquid nutrients (breast milk or formula), toxins are generally purged from the system. However, for some, including Owen, the condition quickly develops into a serious and possibly life-threatening illness that requires treatment and/or hospitalization.
Zwick still carries anger about her family’s experience – at the hospital for failing to do a jaundice blood test before Owen was discharged after his birth, at her provider for dismissing her concerns about her son’s color and grogginess during a home visit, and at herself for not following her instincts and getting a blood test earlier.
“It was so dangerously high when it was finally caught,” she says of Owen’s jaundice level. So high, she called her best friend and asked if he would be the one to call friends and family if Owen died.
Pediatricians caution parents to call 911 if their newborn infant is unresponsive or difficult to awaken or is not moving or is very weak. See a doctor immediately if your baby:
- has skin yellowing that began during the first 24 hours of life
- has skin that looks deep yellow or orange at any time in the first days after birth
- is a high-risk baby for severe jaundice due to prematurity (36 weeks or earlier)
- has an ABO or Rh blood group problem or has a sibling who needed light therapy
- is feeding poorly or seems lethargic
- shows signs of dehydration (no urine in eight hours, very dry mouth, sunken soft spot)
- has a fever above 100.4° F (38.0° C) rectally
- has a low temperature below 96.8° F (36.0° C) rectally that doesn’t respond to warming.
A year later, when Zwick’s good friend, Mindy Huffman, gave birth to her son, Lionel, who showed signs of jaundice, Huffman didn’t take any chances. She had her son tested and found he did, indeed, need treatment for an above-average bilirubin count.
In Lionel’s case, says Huffman, “The doctor was very reassuring and told us that the numbers weren’t anything to be worried about, and they wanted to treat him to be on the safe side. The fact that jaundice is fairly common was also comforting to us.”
But nonetheless stressful.
“Going through jaundice treatment in the first days of Lionel’s life was hard, but mostly because we had no idea what we were doing as new parents yet, and it was another layer of complexity on top of little sleep,” says Huffman, whose son was treated at home. “Fortunately, the staff at Infant Home Phototherapy was amazing. They came to check Lionel’s bilirubin level and weighed him, so I got reassurance that he was eating well and improving.”
Both Zwick and Huffman encourage expectant parents to inform themselves about jaundice, its signs and treatment before baby arrives.
Then, says, Zwick, “Get a blood test if you have any concerns. Don’t listen to anyone who brushes you off. It’s not their baby’s life.”
