Kyle, 3 – Bakersfield, CA
As told by his mother:
Our son, Kyle, got his health care through his father’s employer. In 1992, Kyle began having ear problems when he was only 6 months old. Because it took our HMO so long to get the specialized treatment he needed, Kyle is now "maimed" for life. Besides the horror of a lifetime of hearing loss, Kyle will continue to be monitored every year for potential problems that could develop.
We first became concerned about our HMO because the corrective measures the doctors were taking were not working. After approximately 9 months of similar treatments, we requested Kyle be sent to an ENT specialist as a "tube" candidate. A "tube" is a teflon tube that is surgically inserted in the ear to allow for drainage of infected fluids. We were told the HMO didn’t like to do tubes anymore, that tubes were "over prescribed". For 9 more months, the HMO kept Kyle on a ritual of antibiotics. He was finally referred to an ENT when it was noted that his eardrum had ruptured.
The specialist confirmed that Kyle definitely needed tubes and went through the necessary paperwork to schedule him for surgery. During the surgery, the polyp was removed and sent for a biopsy. PE tubes were placed in both ears. After 10 days, Kyle’s right ear began to bleed.
A CAT scan then would have provided conclusive evidence of a cholosteatoma — severe infection that destroys the bone in the inner ear. Instead , the HMO chose to withhold that test.
For 3 months, a new doctor continued with ear drops and aspiration. He finally concluded Kyle must have had an allergic reactionto the "metal" tubes the first doctor placed in the initial surgery. He scheduled another surgery to remove and replace the PE tubes. (The new doctor did not request copies of any of Kyle’s records from their old doctor’s office to support his theory).
After several months we finally came to the conclusion our son was not getting the necessary treatment he needed to resolve his problems. We advised our doctor that we were changing HMOs and, at that point, the doctor suggested that we do exploratory surgery to determine what was going on in Kyle’s ear. The doctor recommended we tell the new HMO of this suggestion.
After discussing Kyle’s history with their ENT at the new HMO, lab tests were performed and a CAT scan was scheduled. The CAT scan disclosed a cholosteatoma. Kyle was immediately referred to a head and neck surgeon in Oakland. Kyle’s surgeon explained the cholosteatoma was caused by a number of different things and he couldn’t pin point the exact cause, but that chronic ear infections was one of the causes.
At the age of 3, Kyle was scheduled for another surgery. The doctor called us from the operating room and told me the surgery would last 3-4 hours. After 7 hours of surgery, the doctor came out and explained that because the cholosteatoma had been undetected for so long it had done extensive damage to the middle ear. They had to do a radical mastoidectomy, which included removing all of the bones (with the exception of the stapes) in his middle ear. There is a 70% chance of success for this procedure.
We are now facing another surgery for our son this year to attempt to reconstruct the middle ear and are anticipating "significant" hearing loss as he reaches adolescence.
Because of the ERISA loophole, the first HMO is shielded from legal liability for withholding medically appropriate treatment. The few dollars the HMO saved by withholding a CAT scan could have led to meningitis, or even killed Kyle. Until HMOs are held accountable for denying or withholding care, there is no incentive for them to perform tests that could lead to expensive treatments.