She Knew Something Was Wrong from the Beginning: Newborn With Genetic Liver Disease
August 18, 2015
From the beginning, Christina Whitehead knew something was wrong.
Her newborn son, Nathan, who arrived March 2, was born with jaundice.
Though it’s common for a baby to display the yellowish discoloration of the skin and the whites of the eyes, as Nathan’s jaundice persisted Whitehead’s anxiety increased.
She said her baby’s doctor told her that the condition would clear up in time, that sometimes jaundice can be the result of breast-feeding.
But it seemed to Whitehead as the days went by that Nathan’s condition was worsening.
When the infant’s urine turned dark brown — a symptom that Whitehead’s mother, who died last week from pancreatic cancer, also experienced — the Mokena mom and her husband, Robert, rushed their baby to Silver Cross Hospital in New Lenox.
“They took some blood and then transferred him to Lurie (Children’s Hospital in Chicago),” Robert Whitehead said. “That’s when we knew it was serious.”
Four days later, in mid-June, doctors at Lurie told the Whiteheads that their tiny newborn needed a liver transplant.
“We still don’t know the exact diagnosis,” Robert Whitehead said. “We’re waiting for labs to come back from Germany. We assume it’s something genetic.”
Dr. Saeed Mohammad, an assistant professor of pediatrics at Northwestern University and an attending physician at Lurie Children’s Hospital, said, “Nathan has an extremely rare liver disease that is progressing rapidly.
“We have our suspicions as to what it is — because he’s so young, it could possibly be a genetic disease — but we need confirmation,” Mohammad said, adding that the results from genetic testing take four to six weeks.
Nationwide, there are fewer than 500 cases each year in children and teens under 18, Mohammad said.
“If it is what we think, it’s pretty rare. For it to be so advanced is exceedingly rare,” Mohammad said.
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