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Among the alphabet diagnoses, CHARGE is a relatively new one. And being rare, many people have never heard of it. But few of the better-known syndromes threaten life as significantly as does this. CHARGE affects so many physiological functions that life can be touch and go for the first two years, even with such extreme measures as the use of external respiratory and feeding devices.
The child who does survive is often faced with a profusion of developmental challenges. Below are some of the obstacles facing children with CHARGE syndrome:
pain, and suppressed auto-immune resources
visual deficits (blind)
- deafness, oddly shaped ears
- respiratory insufficiency, blocked nasal passages
- deficient sense of smell
- digestive system problems
- dysphagia, swallowing problems
- genito-urinary abnormalities, kidney anomalies
- cardiac problems
- endocrine disturbances, including growth hormone deficiency
- skull shape deformity, facial palsy
- speech problems, cleft palate
- "autistic-like" self-stimulatory behaviors
Like all the alphabet diagnoses, CHARGE is an acronym - but in the case of this syndrome, there is some disagreement about what each of the letters stands for. (See sidebar, left, for a description of the acronym CHARGE.)
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As is true with most labels children bring to their HANDLE evaluation, the label means less than how the youngster functions as an interactive composite. An approach that considers the child holistically is always preferred to one that addresses only parts of the whole. For CHARGE children, however, that difference is even more vital because so many interrelated systems are affected.
A primary distinction of Judith Bluestone's approach to understanding function in these children is her attention to the cranial nerves. Ever increasing numbers of professionals, whose practices include CHARGE children, are also noting the significance of the cranial nerves. So much so that "colomba", the official "C" of CHARGE, may someday be replaced by "Cranial nerves." Within the population of those with CHARGE, the breakdown of signs and symptoms involving cranial nerves, according frequency of their occurrence, are shown in the sidebar, left.
Another distinction of HANDLE, as it pertains to therapy for this population, is the application of multiple disciplines. To "access" affected internal organs, Judith uses the Chinese healing art of reflexology both diagnostically - to identify needs - and therapeutically - to support function in the disabled body part. Unlike many "alternative" methods, which can be judged as requiring a belief system - as in, if you don't believe it'll work, it won't - these youngsters have no idea why Judith picks up
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their bare feet, nor why her thumb pulses into the middle of their soles. Yet, accessing the diaphragm, solar plexus, lungs, through reflexology can ease their breathing. I have been witness to this. I have, also, shared a meal in a restaurant with an eleven-year-old girl who had previously required the use of a feeding tube.
As an acknowledgement to her success, Judith was invited back to present at this year's International CHARGE Syndrome Foundation Conference. This bi-annual conference, aimed at providing information and support to families who are often alone in their communities to deal with this life crisis, was held in Indianapolis. At the 1999 conference, Judith introduced the HANDLE paradigm as it applies to CHARGE Syndrome. This year she chose a dual approach. First, she identified the symptoms in herself, which most assuredly would have earned her a CHARGE diagnosis had such an acronym and its criteria existed in the '40's. Additionally, she presented a perspective of how the cranial nerves - each with its own distinct role in neuroanatomy - interrelate and affect overall function.
She enlisted me, her older sister, to introduce the diagnostic "evidence" of her diagnosis, as well as to track her development through childhood and adolescence to the present. Parents of CHARGE children were introduced to a hopeful image of a productive and adapted adult, namely Judith Bluestone.
At the heart of the presentation, Judith exhibited a chart
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