The moment: “Meeting Johan, 8 months old and death, gave me courage"

Name: Eva Karltorp
Title: Senior Research Fellow in Audiology at the Department of Clinical Science, Intervention and Technology, Karolinska Institutet.
Currently: Published a thesis in December 2013 on why children are born deaf and the optimal age at which to give them a cochlear implant.

Eva Karltorp. Photo Mattias Ahlm.

As told to: Helena Mayer. First published in Medical Science 2015

Meeting a deaf baby caused Eva Karltorp to dare to question the established treatment of congenital deafness. Now the majority of deaf children can talk as well as those with hearing.

“Normally, one child per year was diagnosed as deaf at our hearing clinic. But in one week in 1997, four children were given the same diagnosis. I thought this was remarkable. The fourth child, Johan, eight months old, was actually the one who made me begin my research, because when I met him I began to doubt whether the deafness was actually due to the normal explanation that it was an inherited injury. Instead, I thought that it could be a congenital viral infection and one year later I found a research group that was looking for the causes of deafness, and joined it. Gradually, it became clear that cytomegalovirus was the cause of congenital deafness in three of these four children.

At the time, it was common to surgically implant a hearing aid called a cochlear implant at the age of three or four. The idea was for the child to use sign language prior to the surgery; this was thought to be best. But the results were very poor; when the child had the surgery, they had had so many years of silence that their ability to speak and understand spoken language never caught up with that of their peers.

At the same time, I had begun to become aware that the results were better in other countries where the surgery was performed earlier and children’s speech and language development was supported, for example, with the help of speech therapists. I thought: Why not give our children the same chance?

I talked with Johan’s parents and they were prepared to go ahead. He was given the cochlear implant when he was only two years old and his parents arranged for a speech therapist themselves. Johan then became the first child with congenital deafness in Sweden who started mainstream school in year one.

Now children’s hearing is tested directly after birth with neonatal hearing screening and they have the surgery from five months of age. And the majority of children who have the surgery early have an ability to speak consistent with their age group by 1.5 years of age. Having been involved in turning this ship around has been fantastic.”

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