Jewish Health

Dr and Mrs Koch - Interview 35


Brief outline: Dr and Mrs Koch had two babies who were born with Tay Sachs disease and died in childhood.

Background: Dr Koch is a retired pathologist. Dr and Mrs Koch have two grown up children. Ethnic background nationality: Jewish

Audio & video

After having a healthy son in the late 1950’s, Dr and Mrs Koch had a baby daughter whose developmental difficulties became apparent at six months. After assessment at two hospitals, they were told that the baby had Tay Sachs disease. At that time, little was known about the disease and the couple describe feeling “shattered” by the news that their daughter’s life expectancy would be 3-4 years. There was no counselling or diagnostic tools available at that time, but the couple thought that, statistically, they were unlikely to have another baby with Tay Sachs. Their third child had Tay Sachs too and both children were cared for until their deaths in a long term stay hospital. Dr Koch describes what a terrible experience Tay Sachs is for both the child with the condition and family members. 
Coincidentally, at that time, Dr Koch was researching enzyme deficiency diseases and Tay Sachs was a condition on the list. He switched his resources to focusing on Tay Sachs disease and developed a diagnostic procedure to test for the condition. He and some other parents set up the Tay Sachs Foundation which was eventually taken over by Jewish Care. This continues to operate a Tay Sachs screening programme which has been very successful in reducing the number of babies born with the condition. 

Dr and Mrs Koch counsel people about being carriers of the Tay Sachs gene and run educational programmes in schools. After the birth of their third child, they adopted a son and describe their relationship with both sons as “wonderful”. 


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