Life is limited for Jesse Champion, five years after her birth at Alta Bates Hospital in Berkeley.
"She doesn't walk, she doesn't talk, she can't sit up by herself, she can't feed herself. Basically, I do everything for her," says Jesse's father, Michael.
But her parents believe it didn't have to be this way. They say shortly after Jesse was born, they alerted hospital staff that she looked jaundiced; the yellowing of the skin is common in newborns.
At discharge they say doctors advised them to place Jesse near a sunny window when they got home, which is a common therapy for newborn jaundice. However, no baseline blood test was taken to gauge the severity of the problem.
The test is not mandated by the state, but is recommended by the American Academy of Pediatrics when jaundice appears in the first 24 hours.
"We got home and I think like the next morning, we just noticed that she was just really -- her color really changed. So we called the doctor in the morning to try to get an urgent appointment," says Jesse's mother, Kimberly.
The family went to Oakland's Kaiser Hospital which was their main health care provider.
In a lawsuit naming both Kaiser and Alta Bates, attorneys for the family say doctors then twice tested Jesse's blood for elevated bilirubin, a bi-product of red blood cells. A high count indicates the inability of a newborn liver to properly filter the blood -- the danger is bilirubin can enter brain cells and cause permanent damage, even death.
They suit says when the initial test failed to produce a result, doctors called the family back for a second test that showed critically high levels of bilirubin.
The family says they were then told to drive Jesse to back to Alta Bates, without ever being advised of the potentially dangerous effects of her elevated bilirubin until they reached the hospital.
"And then they started to take Jesse from me. I was like, why are they taking her? Why are they taking her from me? Because they hadn't told us anything," says Kimberly.
According to the lawsuit, the family then waited another four and a half hours at Alta Bates before doctors finally performed the first of two blood exchanges.
"If you think about that toxin like a mercury in a thermometer, every minute, every hour that passes, that toxin rises, and as it rises and it reaches certain levels, it does irreparable brain damage," says Cynthia McGuinn, the attorney representing the family. "This child was being poisoned before the eyes of the parents who had no idea it was happening."
After receiving our inquiry, Kaiser issued this statement to ABC7 News: "We understand this is an emotional situation for the family, and extend our sympathy and continued support. Out of respect for patient privacy and because it is in litigation, we cannot discuss this specific case."
Alta Bates also declined to comment on specifics of the case. However, both hospitals have denied the allegations in court filings.
While cases like Jesse's are relatively rare, they have helped fuel a growing debate on how to best screen and diagnose newborn jaundice. Now, some parent advocacy groups are proposing a mandatory bilirubin test for all newborns before they are discharged from the hospital, whether or not there are any obvious signs of jaundice. .
Most hospitals have yet to sign on to a catch-all approach. Dr. Carol Miller is a clinical director of pediatrics at UCSF. She says their nursery performs a systematic assessment of all newborn infants for jaundice. A blood test is typically added only if there are indications of risk.
"We don't want to over-treat something that's very common, and for most babies is a benign process, but at the same time, we don't want to miss any cases of severe elevated bilirubin," says Dr. Miller.
"I think we're heading toward testing for bilirubin on a routine basis," says Stanford neo-natal specialist Dr. Vinod Bhutani, a recognized expert on elevated bilirubin. He has helped research the issue for the Academy of Pediatrics.
Dr. Bhutani believes a compromise may be coming. It involves expanding the blood sample that is already taken by state law to screen infants for genetic disorders.
"So during that screening, if a blood sample is also sent for a bilirubin test, then you have your risk assessment right away," says Dr. Bhutani.
As for Jesse, her family's lawsuit argues that because she showed signs of jaundice before discharge, she should have been tested for elevated bilirubin.
"She'll probably never walk, she'll probably never talk, probably never even sit up. That's lifelong," says Michael.
While she is severely brain damaged, the Champion family has been told that Jesse could live nearly a normal life span and will need special care for the rest of her life.
Parents of infants or children with Kernicterus, is a support group with expertise in issues related to Jaundice and elevated bilirubin in infants, which in extreme cases can lead to brain damage and a condition called Kernicterus For more information, visit www.pickonline.org