The Tuffs family
Donna and Richard's son Noah was 16 months old when he contracted pneumococcal meningitis in April 2006.
Noah's PCT, Barnet, provided funding (without appeal) for simultaneous bilateral implants and the operation was carried out on 22nd June 2006.
Why did you feel a bilateral was important?
Noah suffered a bilateral profound hearing loss as a result of pneumoccocal meningitis. We felt that 2 implants would replace 2 working ears (put very simplistically) If we had not got funding for simultaneous bilaterals we would have raised the cash because there was no way we were going to put our son through an unnecessary 2nd op after what he had been through. We were told that his ears were ossifying and that the operation was urgent - "within the next 2 weeks". We feel quite strongly that bilaterals should be a given especially for post-meningitic children whose ears are ossifying and are disgusted that it is not always the case.
How did you go about getting funding?
The hospital (implant team) applied for funding
If NHS funded, what do you think made the difference in securing funding?
Our surgeon was very keen to do simultaneous bilaterals because of the ossification.
How long since bilateral switch on?
Switch on 4 weeks after surgery over 5 sessions- July/Aug 06
What benefits are you seeing?
Noah's understanding is almost age appropriate although his expressive language is much more delayed. His location of direction of sound is good. He turns to his name in noisy places and overhears frequently.
Are there things that have been important post-switch on in getting these benefits?
AVT has been the most important thing in getting these benefits. Noah also goes to Christopher Place and has been to the John Tracy Clinic. All three of these places have helped us as a family to get the most out of Noah's rehabilitation.
What does your child think? How involved were they in taking the decision? What do they think of it now?
Noah was too young to be involved in the decision making. He knows he hears through his implants and is deaf without them. He knows that most people do not hear the same way as him. He will acknowledge other children's processors. In the mornings he starts to put the external parts together. We think he is happy with his CI, he is sociable, loves music and dance, he is speaking lots because he wants too and can because he can hear so we think he is and will be happy with our decision, we certainly are.