When our daughter Ruth’s neurologist first uttered the word “kernicterus” it flew right over my head. She had died only a few days before. I sat at my husband’s desk frantically scribbling notes in a yellow legal pad, desperately trying to understand why Ruth was gone.
“Very rare,” the doctor said. “Almost unheard of in this country.”
Like Ruth, the one other patient our Maine pediatric neurologist had treated with the condition had died in her sleep. Like Ruth, her sheets were soaked with sweat. Like Ruth, she had overheated.
“Kernicterus,” the neurologist said again.
Premature babies, like Ruth, it turns out, are much more highly susceptible to this little-known condition, which is caused by a build up of bilirubin, the neurotoxin that causes newborn jaundice. Like sixty-percent of all newborns, both my older sons came down with jaundice. As a new mother, I didn’t know the golden glow of their skin was dangerous.
“Lay your baby on the floor in the sunlight, and it should go away,” I was told both times.
I followed directions, and it did.
What I didn’t know was that sometimes it doesn’t. When bilirubin in a baby’s blood stream enters the brain, it often results in cerebral palsy, hearing loss, and malformed baby teeth. Because Ruth was born in Uganda and abandoned at birth, we don’t know her newborn bilirubin levels, but she had all three underlying conditions. Ruth had only seen this particular neurologist twice, but when he told me about kernicterus and we finished talking, I was in a daze.
More than a year later, I pulled out that yellow legal pad and went over the doctor’s notes. This time I looked up “kernicterus” on the Internet and found a link to a web site, Parents of Infants and Children with Kernicterus (PICK). Sadly, I learned cases like Ruth’s aren’t as rare as many think. Even in America an estimated one-hundred new cases occur each year. Just ask Miriam Iliff, social media coordinator for PICK.
Miriam and her husband brought home a healthy 37-week-old baby from the hospital in 2005 only to have him suffer permanent brain damage from bilirubin nine days later. Today her son, uses a wheelchair, communicates with a computer, and receives nutrition via a feeding tube, as did Ruth.
Iliff and other member of PICK are currently lobbying the Centers for Disease Control to educate parents and doctors about kernicterus and to track the number of new cases each year. The response so far has been disappointing. The CDS said it lacks money to address the issue–despite that caring for a single child with kernicterus can be as much as $60 million over the course of a lifetime.
As for us, we hope to spread word about this condition in Uganda, where incidence of kernicterus are likely much higher. My husband, Dana, is planning to deliver wheelchairs to Uganda this August with Joni and Friends. Wouldn’t it be great if fewer people needed them?
To help sponsor Dana for this trip, click here.
“For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future,” Jeremiah 29:11.
Meadow, great piece!!! A non-profit that we work with in Uganda just reported that TWENTY percent of the jaundiced babies in Uganda’s largest hospital were dying. Further, it sounds as if they didn’t have adequate lab facilities to be running bili tests. Sadly kernicterus is rarely reported because of the fear of blame, as it is so preventable.
That is so sad, Miriam. What is the name of the non-profit? Maybe Dana can get in touch with them when he is over there.