Congenital Rubella Syndrome 1

A little bit of history.

My first research project was on deaf and deafblind children who were born with multiple disabilities because their mothers had been infected by the rubella virus during pregnancy. At the time I started my research, I had over ten years experience teaching children who were deafblind due to Congenital Rubella Syndrome (CRS). As a graduate student in special education and clinical psychiatry, I was intrigued by the peculiar behaviour of these children, and their strange ways of learning.

Heather Hewitt, Director of Monnington, an organisation in Melbourne, Victoria (Australia), invited me to cooperate with her team in a research project on "rubella children." The rubella epidemics of the 1960s had left Australia with many victims. I worked with the psychological staff of Monnington to collect data on 81 children, with a mean age of 65.7 months, who were deaf and deafblind due to rubella. Of these 81 children, 63 were "deaf only." 18 had additional visual impairments because of bilateral cataracts. This was the deafblind group.

Click on a picture to enlarge it.

What did I want to learn from the Australian research? (What were my research hypotheses?)

I wanted to find out if (1) the duration of the mother’s pregnancy, (2) the time she was infected during her pregnancy, and/or (3) the child’s birth weight, had any relationship to issues such as:

  • the child being autistic or having autistic tendencies
  • the child’s learning capacity
  • the child’s development of motor skills (e.g. learning to walk)
  • the child’s ability to communicate, and to learn speech

What was the result of the study?

We found that relationships did exist between the 3 “physical” variables and developmental issues, and that the “physical” variables even predicted these outcomes. It could be generally stated that the earlier a mother was infected in pregnancy by the rubella virus, the less favourable was her child’s developmental outcome. This was particularly true if, in addition, the child’s vision was impaired by cataracts (opacity of the ocular lens) in both eyes.

Recommendations for educational practice included an emphasis on early training of the motor system, as well as stimulation of interaction and communication.  Also, the research clearly showed that a visual impairment had an important impact on learning and (stereotypic) behaviour. Consequently, teaching the child how best to use his/her residual vision was an educational emphasis. Early and proper fitting of glasses (or contact lenses) was given high priority. In order to provide a child with the best visual and auditory environment, reliable assessment of both hearing and sight was necessary. For this reason, I advocated for, and was instrumental in establishing at the Institute for the Deaf, a specialised Vision Assessment Centre for people with deafblindness.

The Teller Acuity Card was one test administered at the Centre.

The direction of the child’s gaze indicates if he perceives the striped pattern.

The Institute’s Audiological Department developed new methods for reliably assessing a deafblind child’s hearing, and providing him with the best auditory aids and, more recently, with cochlear implants.

One audiological test was B(rainstem) E(voked) R(esponse) Audiometry (BERA).

In this test, electrodes pasted to the skin (one placed behind the ear) record neural responses to brief tones.

This study of Victorian Rubella Children was accepted by the Department of Educational and Psychological Science of Radboud University, Nijmegen, The Netherlands, as fulfilment for a doctorate degree (Ph.D.).

In the last image (in the right side bar) , Claartje, the first deafblind student I taught, congratulates me after I am awarded my doctorate degree.

Read 8109 times
More in this category: Usher Syndrome »