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Ann-Charlotte Gyllenram, Barnplantorna, Sweden
In March 1990 our beautiful two year old daughter Madeleine contracted Haemophilus meningitis three weeks before her third birthday. It seems like a long time ago even though, as a parent, you will never forget. It´s like a movie that you anytime can press the button "play" in your head and remember lots of horrible details from the first two days of intensive care in the hospital.
We stayed in the hospital for two weeks. After getting better Madeleine was frustrated and angry because she could not walk, but no-one said anything about her hearing – that it could be affected after meningitis. After a couple of months she could walk again but she was very angry lots of times during the day and her spoken language was deteriorating. Madeleine was a different girl and we had hard time understanding why.
When her baby sister was three weeks old we received the information from the doctors that we contacted, because no tests were done after her meningits of her hearing, that Madeleine was deaf. Then we got the information that there was a vaccine available by that time against the Haemophilus influenzae bacteria. One year after Madeleine contracted meningities the vaccine against Haemophilus influenzae was in the Swedish vaccination programme.
So we had a deaf very depressed child that did not want us to comb her hair, she did not want to look at herself in the mirror, she followed me everywhere, becoming hysterical if she could not see me. She relied on all visual clues to try to solve what was happening around her. It was hard. My worse moment was when she put her hands over her ears, took them away and nodded her little head.
So one day about ten months after her meningitis I got a call from a professor explaining about cochlear implant. During the following weeks we learned a lot about cochlear implant, about the deaf community and about the resistence to cochlear implants in children. In June 1991 Madeleine became the first child in Sweden to receive a cochlear implant. She was tuned in a week before my father's seventieth birthday. He thought he got the best present ever – a cochlear implant and hearing for his grandchild.
This was the beginning of a long, long journey. I started an organisation for children with cochlear implants, to get the power to change the resistence against cochlear implants and to see that these children get the right education. This has given me lots of contacts with parents all over the world. Over the years I have also met parents whose children contracted meningitis caused by the pneumoccocal bacteria.
At the beginning of 2003 my organisation started a huge information campaign to inform parents about the pneumococcal vaccine, and finally stubborness paid off. In the Autumn of 2008 the Swedish Government included the pneumoccoccal vaccine in the vaccine program for babies.
Today I work fultime as the president of BARNPLANTORNA (The Swedish Cochlear Implant organisation) and Madeleine is 23 years old. She can hear and speak and attends the university. She has her own car and does lots of things that I never thought she would have been able to do again.
Cochlear implants are fantastic but really we don´t need any more children contracting meniningtis and dying when there are vaccines available. After all these experiences I know how important it is to meet other parents that experienced this horror so that one can share feeling and maybe get some answers from parents that experienced the same. This is vital when the crisis hits your family. Parents need information that is why work like COMO does is so important worldwide.
Ann-Charlotte Gyllenram
