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Medical Community Should Take Proactive Approach to Kernicterus Treatment, Reporting

From: The Hospitalist, December 2011

by Miriam Iliff

I’m writing in regard to the article “Incidence Rates of Kernicterus Remain Unchanged” (The Hospitalist, October 2011, p. 12) by Mark Shen, MD, FHM. As a mother of a child with kernicterus (born in 2005), I’m very concerned with the cavalier attitude toward hyperbilirubenia treatment and the reliance upon inaccurate statistics. Reasons for the inaccuracy:

• Your data is for California only;
• DDS reports of kernicterus are likely inaccurate. Nothing our son is enrolled in lists his diagnosis as kernicterus. Most institutions don’t have it in their database. Paperwork for my son shows encephalopathy, cerebral palsy, athetoid cerebral palsy, dystonia, or quadraplegia, but rarely kernicterus. As a result, I and other parents of children with kernicterus can attest to a massive under reporting of kernicterus, wherever you look;
• Our parent group, PICK, is constantly growing, with new members every month across the country and across the world;
• Even death certificates are subject to the fear that comes with kernicterus. Physicians know that putting this information on a death certificate will lead to a lawsuit, and thus are more inclined to list respiratory failure or other secondary causes as the cause of death; and
• Many children with kernicterus are never properly diagnosed or given diagnostic tests like an MRI to confirm the damage. They are instead steered away from the diagnosis, even when it is the obvious cause.

Please understand that the “kinder, gentler” approach to hyperbilirubinemia is why my son has kernicterus. He was repeatedly inspected visually, and our concerns were dismissed. At nine days old, they dismissed our concerns and coded us “low priority.” When finally seen, his bilirubin was 45.6, his pulse ox was 69, and he was posturing. His MRI revealed the classic signal intensity in the globus pallidus. He failed the hearing test that he had passed easily the weak before. His life care plan is 69,000,000. He is fed via G-tube and unable to manipulate his limbs of trunk to perform any daily living tasks. He uses a wheelchair, gait trainer, stander, bath chair, lift, cochlear implant—the list goes on and on.

All of this could have been avoided with a little “overtreatment.” I believe the cost of a proactive approach could hardly compare to the costs that these children with kernicterus incur in their lifetimes.

So many are afraid to admit the potential dangers of newborn jaundice. Many say that they wouldn’t want to scare a parent. As a parent, I’d like to say that I am not afraid of something that is treatable and preventable. Educate us and let us help our children avoid serious peril!

Everyone in the medical community needs to take the proactive approach, as well as find a means of reporting kernicterus that is free of the liability concerns, or be willing to face them.

The CDC has created excellent new materials that seem to be getting very little attention but could have saved my son a lifetime of unspeakable struggle. Please take a look at them and consider distributing them at your treatment facilities.

Miriam Iliff, Fayetteville, N.C., past board member, Parents of Infants and Children with Kernicterus (PICK)