Severe hearing loss in both ears caused by bacterial meningitis

[Ciaramarie98]

My son had pneumococcal meningitis in June 14 at eight months he now is nearly 18 months and has just been diagnosed with severe hearing loss in both ears. He has his hearing aids fitted today but are still waiting for MRI. I am really worried as I feel implants may not be a option if the hearing aids don't work as its been to long since he had meningitis ?!? Also I am so worried he won't be able to speak ?!? Has anyone been in a similar situation with there child ? Any success stories ??? I know we are so lucky that he is with us and the hearing loss a small price to pay but just when you think everything ok.

[StrawberryCream]

Hi Ciaramarie

Am so very sorry to hear that the pneumococcal meningitis has resulted in severe hearing loss for your son. Has this only recently been realized and not recognised after the meningitis? Maybe the specialists need to try the less invasive things first and that is why they have fitted hearing aids to see if they will have any positive effects. I am wondering why you fear that cochlea implants may not be an option? The reports I have seen when inserted on a child or adult seem to have remarkable results for many. Possibly the Drs are not wanting to say whether or not he will be able to hear enough to learn language and speak because at the moment it is a case of let's wait and see how things progress with treating the hearing loss. It is such a difficult and upsetting time for you as a family especially as you had huge relief that your son survived such a nasty life threartening illness to now suddenly be faced with finding out he has been damaged by it in a life changing way.

My thoughts are with you and your son.

[Ciaramarie98 in reply to StrawberryCream]

Thank you for your reply strawberries and cream. Unfortunately his hearing loss has only been picked up. He had two tests done in September and October but we're inconclusive . Then the referral got lost to the specialist centre and when they did receive it they didn't relise it was a priority hence why only finding out nearly ten months later. He was very poorly and all his care was excellent apart from this. This was sent locally where If it remained in Gosh prob would not of happened. I didn't have any concerns only really in the last month as he has had other problems to and done so well, been very poorly, is very happy and responsive . The only real concern that wasn't talking but taking everything into consideration I thought he may be delayed and plus all children develop at different stages.

I have read if you have hearing loss as a result of menigitis that if not picked up straight away the hearing loss can deteriate and the bone can grow not allowing for implants. Anyway they have said that the aim for him is to talk but I was just hoping there maybe someone who could maybe give me some hope x

[StrawberryCream in reply to Ciaramarie98]

This is such a sad situation you are describing and the delay very troubling. The NHS does seem to struggle when one hospital has to communicate to another and even between departments in the same authority (as has been my experience). That is wonderful to hear that his care at GOSH was excellant and for that you still have your gorgeous little boy. It is hard to recognize any developmental difficulties because as you say they all reach milestones at different times and allowances would be considered because of the serious meningitis illness that made him so very poorly and will have taken him some time to recover from. Children are so amazing though aren't they how regardless of what the've had to endure they are the smiliest, happiest children.

I think you have to wait to see what the investigations show if you can rather than start worrying now that implants are not going to be possible. Keep an open mind and find out how it really is for your son. The web is great for accessing info but it usually gives the worst scenario and therefore can worry us unnecessarily and make us feel convinced that the outcome will inevitably be dire. This is not usually the way it is for most but maybe for a small percent.

I know of adults on here who have had cochlea implants and for at least one it was immediately after his BM and before discharge, but for others it was not done till later on. The difference for them was they had previously been hearing and had speech. I am not aware of any parents of children who have similar experiences of hearing loss as your sons but I may be forgetting someone's post or there could be a 'browser' who has never posted who may be encouraged to respond to you. x

[MNClaireD Partner Meningitis Now]

Hi

I have sent you a private message

Claire