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Developmental Disabilities > Kernicterus > Materials > Video Transcript
Kernicterus / Jaundice - Video Transcript

Text transcript of video

Unidentified Speaker: Kernicterus is a serious problem where otherwise normal children can suffer life-long neurologic consequences. It shouldn’t happen.

Jose Cordero, MD: This is a condition that actually is totally preventable, if children or infants that have jaundice can be identified, and then treated appropriately.

Sue Sheridan: I always say this: I don’t think the human language can do a very good job of explaining the depth of disability that these kids live with.

Cal Sheridan: No one should get kernicterus.

Jess Dixon: Kernicterus basically ruins your life.

Martin J. Hatlie, Esq.: And it’s heartbreaking. I mean, we have children here who are not mentally retarded, they’re not cognitively impaired by this disease at all, and yet they’re locked in bodies that just don’t work, and they’re going to lead very, very challenging lives.

Stacy Lucas: It’s like if you were to tie your hands, your feet together, put cotton in your ears, gag your mouth, and then live your life. That’s sort of what Christa faces each day.

Jodie Johns: I look at Nathaniel, and I think, "There is not one day in his life that he doesn’t have to give 110 percent. He doesn’t have a choice.”

Melissa Li: The hearing loss that he has is called "auditory neuropathy," and that’s associated with bilirubin damage.

Rick Croteau, MD: Sixty percent of newborns do have some level of jaundice. The jaundice is an expression of an elevated bilirubin level, and bilirubin, in newborns, is a toxin, and should be recognized as such.

Sue Sheridan: Let moms and dads know that their babies can be hurt by jaundice. It’s not like a rash; it’s not like a common cold. This has injured our kids permanently.

Unidentified Speaker: I was told that jaundice was like a cold: it would get worse before it got better. No one said it was like a pneumonia, and it could kill you.

Dr. Rick Croteau: The fact that infants are not routinely tested for this toxin is difficult to understand, especially when one recognizes that the test is available, relatively easy to perform, and inexpensive.

Duane Alexander, MD: This is something that we ought to be able to avoid, and we do have the capability of avoiding that by screening babies before they come home from the hospital.

Anita Boles: We know about jaundice, we know what causes kernicterus, and we know that if we get the right tests, and the right treatments, we can prevent this.

April Messer: I think the most important thing to remember behind this is: these are innocent children. These children had just as much chance as everyone else, and were not given that opportunity.

Sue Sheridan: I know I watch my daughter, and my son, who had the same blood incompatibility: One got a test, one didn’t. And I watch them play side-by-side with two incredibly different futures.

Mike Friedlander, Ph.D.: I find it exasperating and frustrating when you see the tremendous damage this can do, and how it affects families, when we know we have the information in hand to do a lot right now.

Karen Dixon: This is an emergency. Babies are being injured. And, you know, while we’re sitting here talking about this, it’s happening again.

Steven M. Shapiro, MD: I gave a talk to the Child Neurology Society and this is--these are the pediatricians who are neurologists, like myself, and I asked for a show of hands of how many had seen a kernicterus. This was in October, 2002. And almost every hand went up in the audience.

Sue Sheridan: So within a very short period of time the moms and the doctors were actually connecting the dots, and recognizing that this wasn’t just--these weren’t outliers in the healthcare system, this was a major hole in the safety net in healthcare.

Marshalyn Yeargin-Allsopp, MD: One of the recent recommendations for the treatment, or for the management of neonatal jaundice, includes visual inspection.

Duane Alexander, MD: It’s very questionable, now, whether a standard of visual inspection alone is sufficient to allow us to pick up the baby who is at risk for kernicterus, from an elevated bilirubin.

Marshalyn Yeargin-Allsopp, MD: It’s very difficult, particularly in infants of darker complexion, to use visual inspection.

Vinod Bhutani, MD: And babies who have darker skin color, like mine, you may find that it is difficult to assess how much jaundice a newborn baby actually has.

Rick Croteau, MD: Practitioners may, in fact, be right a lot of the time. Let’s say 90 percent of the time, 95 percent of the time. The point is: that’s not good enough.

Sue Sheridan: We believe that screening all babies is, quite simply, the safest way to go.

Duane Alexander, MD: The baby is safer, the physician is safer, everyone is safer, if the most accurate means we have of assessing and predicting a baby’s bilirubin is used.

Rick Croteau, MD: And that involves standardizing some of the procedures, establishing guidelines that everybody can follow, so that things will be done consistently.

Marshalyn Yeargin-Allsopp, MD: Babies get a blood test done at discharge anyway, or prior to discharge. And the same heel-prick that’s used for the blood test for metabolic screening, could be used to also get a bilirubin level.

Vinod Bhutani, MD: The cost of doing the analysis for bilirubin, to the institution, is usually less than a dollar. That’s it.

Sue Sheridan: Our kids’ life care plans are between 10 million and 25 million dollars, for their lifetime, to take care of their medical costs. Not only is it the right thing to do to screen all babies, but financially it also makes sense.

Karen Dixon: How can we say, "Well, you know, we’re not going to test. And you know if they come back in and it looks high, well then we’ll do something about it." By then it could be too late. Like most of our kids: it was too late.

Rachel Nonkin Avchen, MS, Ph.D.: We have an opportunity to prevent something, because we know how to effectively treat it. And that’s an opportunity in the world of developmental disabilities that doesn’t really often come along.

Lois Johnson, MD: For heaven’s sakes, these babies, if you keep them from getting brain damage, they’re going to be fine all the rest of their lives.

Sue Sheridan: As a parent of a child who has such a severe injury, it’s chilling to experience the healthcare system not reacting quickly to this; not implementing a universal screen. It’s confusing, and really disappointing, but that’s why PICK has chosen to partner with the system to fast-track change.

Kris Schulze: Our main reason for doing this is to make sure that kernicterus doesn’t happen to any more families. It’s easily preventable, and we just need to do everything we can to get the word out.

Jodie Johns: Sixty percent of all babies get jaundice. Those are real numbers; those are real babies.

Devin Lucas: If I knew what I know now, I’d have a normal daughter.

Sue Sheridan: Had I known to ask for a dollar test for Cal, I would’ve done it.

Kathleen Haus: I don’t want any more members of this club. I don’t want any more families to be in here. It doesn’t have to happen.

Marshalyn Yeargin-Allsopp, MD: Children who are discharged from the nursery should all have a bilirubin level taken at the time of discharge, to establish whether they are at risk or not.

Vinod Bhutani, MD: There is actually no reason why this is not universally practiced in the U.S., to ensure that every newborn baby has a safe experience with newborn jaundice.

Duane Alexander, MD: And that can be done on a routine basis, and we will pick up virtually every baby that is destined to develop a high bilirubin level, and putting them at risk for kernicterus.

Rick Croteau, MD: The evidence is clear, and the expert consensus is there: that this would lead to a reduction, and eventually elimination of kernicterus.

Nancy Green, MD: There are a number of disorders in newborn children that are equally serious for which little or nothing can be done. Here’s a serious disorder for which prevention can be perfect, or close to perfect. So why not focus on this, where you can make a huge difference in the life of the child forever, and their family.

Marshalyn Yeargin-Allsopp, MD: We are of the opinion that because kernicterus is a preventable disorder, that one case is one case too many.

Unidentified Speaker: One case of kernicterus is one too many. We can prevent them all.

Calvin Sheridan: Prevent this. Two words: prevent this.

Date: November 8, 2005
Content source: National Center on Birth Defects and Developmental Disabilities

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