Advertisement ::

Enlarge Cartoon

My family and I were the subject of an NPR (National Public Radio in the US) report last summer on the Swiss health care system. A team of reporters from Washington interviewed us at length and spent a few days with us. They visited Swiss health care specialists to better understand how our severely disabled 16-year-old and others are treated by the system. This was the last in a five-part series that NPR carried on European health care systems. This one asked if Switzerland could serve as a model for the US.

Our daughter has been diagnosed at different times in her life with severe epilepsy, atypical autism and atypical Rett Syndrome. The last two mean she doesn’t quite fit into any neat medical slot. In that respect, she is typical, ironically, of most of the children I am aware of who have severe neurological disorders.

Google Jett Travolta and you’ll find more than 3,000 reports today on the death of the 16-year-old son of actors John Travolta and Kelly Preston. And these don’t even include the articles in other languages, such as  French stories in our local media in Switzerland, which say he died from a heart attack. Or a seizure. Or a head injury when he fell. Or complications of autism, or Kawasaki’s disease.

Much of the media ink is devoted not just to the cause of the young man’s death but to underlying health problems he may have had and whether or not the family was in denial over their son’s autism or severe epilepsy, if he had either of these.

Two things strike me about these reports. Since virtually no information has been made available by the family, and an autopsy is pending, most of these reports are unfounded, but that hasn’t stopped web sites and newspapers from publishing them as if they are fact. Secondly, there appears to be little understanding  in the media of how common it is not to know exactly what problems a child like Jett may have, and this despite much testing and treatment in many, many cases.

A label for health problems and a clearcut cause of death is demanded, and if they aren’t there then the parents must be irresponsible, is the implication.

Most of us would love to know the cause of our children’s problems, the precise nature of them and the best treatment. We spend our lives, money and what little spare energy we have seeking the answers, realizing as the children get older that we are unlikely to find them.

In the US it is often difficult to obtain medical, educational and rehabilitation services for a child with major health care problems unless there is a clear diagnosis. Unfortunately, despite great strides in medicine in recent decades, children with neurological disorders remain an enigma much of the time, even when, for convenience’s sake, diagnostic tags are put on them. People who ask me what our daughter has are visibly distressed when I say no one really knows: we all prefer answers, a black and white world.

Often the medical tag fits this week, but not next. Our daughter had up to 300 seizures a day for several years. We stopped the medication for seizures – and we had tried many, with varying success – when it interfered dangerously with her growth. Miraculously, since no one could predict it, she has been off medication and seizure-free for four years. We know this could change in a flash and when I hear a story like that of Jett Travolta, my blood runs cold with fear, and for the umpteenth time I wonder if we’re doing the right things.

I feel very lucky that the Swiss system doesn’t insist on a label, which would not bring us any closer to the right treatment; if I were in the US I would need the label for insurance coverage. The insistance on labels, in order to have access to care, unfortunately breeds the notion that all you need to do is check with doctors and your child’s health problems will be explained. Sadly for too many Americans with disabled children, having a label can sometimes backfire.

The story of another child, now an adult, was sent to GenevaLunch this morning by her mother, who had found the NPR story on our family (see her comment on the GL contacts page). The girl grew up in Switzerland with a major health problem (not neurological), she attended college in the US, where the Swiss-American family had moved, and then she fell sick while spending a year studying in China. She had to be repatriated to the US, where the family learned her health insurance would not cover her because of the pre-existing condition. If this sounds familiar it might be because you remember dozens of similar stories in Sicko, Michael Moore’s documentary on the the American healthcare system.

The young woman is now continuing graduate studies in Geneva where the Swiss disability insurance system will pay for her medical treatment.

Related: Swiss train travels with Tara is a series of travel articles about exploring this country with my daughter, which I began to publish on GenevaLunch in December. A third article will be posted this week.

You can leave a response, or trackback from your own site.