It was 1985. An 18 month infant was brought into my office. Her mother was concerned because her previously speaking daughter had ceased talking. (Today we might first think of autism, but 23 years ago that was quite unusual.) I had already placed tubes in her ears at age 12 months and we had normal hearing documented after the surgery.
At 15 months “Amy” had dozens of words. The speaking ceased just after she had a rather serious reaction to her MMR (measles, mumps, rubella) vaccination. Encephalitis, inflammation around the brain, was diagnosed by lumbar puncture (taking fluid from the space around the spinal cord which communicates with the fluid around the brain.) Immediately thereafter, this child whose hearing had been tested as normal after ear tube insertion, was now silent.
She had developed a case of measles from the live vaccine and had developed measles encephalopathy based on the clinical presentation and the laboratory findings. Hearing loss is a well known, but very serious, complication of this measles. Her hearing loss was treated by hearing aids. I don’t know if she received any compensation for her injury since they occurred before the 1988 implementation of the National Vaccine Injury Compensation Program that remunerates people (mostly children) who have been harmed by a vaccine. We reported this case in a journal since I could find no other like it in the literature.
Fast forward to 2005. A father calls upon me as an expert witness in a malpractice case for his daughter. He had tracked me down through reading my 1985 case report. “Paula”, he believed, suffered from her deafness because of her measles vaccine. At first I told him that I do not review cases for parents, but would discuss it with his attorney. The attorney thought there might be a case. (I was not surprised but still very reluctant.)
The father desperately persisted. I finally agreed. I explained to him the same conditions that I place on all my consultations for legal claims. I would review the materials, but only if I thought there was no doubt that the case had merit, would I become involved. And, in addition, if there needs to be more testing to establish fact, the family must agree to have that testing.
The father reluctantly agreed, clearly hoping that I would just take the money and do my, I mean his, job. I reviewed the extensive records.
Yes, she was saying a few words early on, and yes, she had fewer to no words by the age of 18 months. She also had a reaction to her MMR vaccine, but it did not resemble encephalitis. There was no lumbar puncture.
And there was no genetic testing. So I thought, could there be a genetic cause?
In 1985, mapping of the human genome was a futuristic fantasy. In 2005, it was a reality, and genetic testing could now elucidate the causes of hearing loss in very young children. New genes are found almost every day, it seems.
I insisted on a genetic test. A simple blood test. It was sent to the best lab in the country at the time.
“Paula” was found to have a genetic reason for her deafness.
I am sure her parents were devastated. They bore the guilt of carrying the genes that cause such deafness. They passed it along to their little girl. They could not place the blame on the vaccine. No compensation for her or them.
I never heard from the family again. Hardly to blame. Two dreams dashed in one vial of blood and 20 years of medical progress. This tale of two tots reminds me that many times, there is no simple answer to very complex biological problems. What we don’t know today, we can only hope to know tomorrow. Or maybe in some circumstances, it is better that we don’t?