Meningitis in your words

Madeleine's story

  • Date of illness: 01 Mar 1990
  • Categories: Hib (Haemophilus Influenzae B)
  • Relationship: Parent
  • Outcome: Recovery with after effects
In March 1990, our beautiful daughter Madeleine contracted haemophilus influenzae just three weeks before her third birthday.

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 or that it could be affected after meningitis. 

After a couple of months, she could walk again but she was angry regularly during the day and her spoken language was deteriorating. Madeleine was a different girl and we had a hard time understanding why.

When her baby sister was three weeks old we received the information that Madeleine was deaf. Then we found out that there was a vaccine available by that time against the haemophilus influenzae bacteria. One year after Madeleine contracted meningitis the vaccine against haemophilus influenzae was in the Swedish vaccination program.

So we had a deaf and very depressed child who did not want us to comb her hair and 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 worst moment was when she put her hands over her ears, took them away and nodded her little head.

One day, about 10 months after her meningitis, I got a call from a professor who told me about cochlear implants. During the following weeks we learned a lot about cochlear implants, the deaf community and the movement against 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 70th birthday. He thought he got the best present ever – a cochlear implant and hearing for his grandchild.

This was just the beginning of a long, long journey. I started Barnplantorna, an organisation for children with cochlear implants, change the resistance against them and to make sure that these children get proper education and intervention. My commitment has put me in contact with parents all over the world, including parents whose children contracted meningitis caused by the pneumococcal bacteria.

A huge information campaign initiated by Barnplantorna in cooperation with doctors to inform parents about the pneumococcal vaccine finally paid off in the Autumn of 2008 when the Swedish Government included the pneumococcal vaccine in the vaccine program for babies.

Today, Madeleine is 26 years old. She can hear and speak, has graduated from university and has full time work. She has her own car and does lots of things that I never thought she would be able to do.

Cochlear implants are fantastic. But we don't need any more children contracting meningitis and dying when there are vaccines available. After all these experiences I know how important it is to meet other parents who have also experienced this horror.
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