Oct 182013
 

My name is Aidan Sexton and I am writing this as the father of two profoundly deaf children and do not claim to represent Happy New Ear.

My son (13) was diagnosed with a severe loss aged 2 and has been wearing progressively more powerful hearing aids for 11 years.  His hearing has deteriorated steadily and last month he was fitted with a cochlear implant as he had reached the point where he could no longer function with traditional hearing aids.  His implant will be activated at the end of this month and we are all very excited but nervous.  My daughter (10) was born profoundly deaf and received her implant at 18 months.  Both children have learned age-appropriate speech and language, attend mainstream schools and are doing very well. Yet they both suffer from those problems typical of deaf children with unilateral corrected hearing.

Cochlear Implant

With unilateral (one ear) implantation a child can easily learn to listen, hear and even speak in a quiet controlled environment.  However, while unilateral hearing is obviously infinitely better than no hearing at all, it presents some challenges to the individual concerned.  For example:

Unilateral hearing makes it difficult to decipher and understand speech in a noisy background.  And I don’t mean the local pub or nightclub where we all find it difficult.  Simple vital settings like classrooms and sports fields are very difficult settings for deaf children.

Unilateral hearing makes listening hard work.  Deaf children all suffer from listening fatigue.  It is exhausting for them to listen all day and try to make sense of what they are hearing.  Unilateral hearing makes it almost impossible to differentiate the important information from the background white noise.

Cochlear implants, like any other medical device, can fail.  In this eventuality, a child with a unilateral implant is left with no sound at all for a minimum of six weeks while the failed device is removed and replaced.  This is very difficult for all concerned, leaving the child without their normal mode of communication for six weeks.  Unfortunately, in the past year this has happened to at least two children, leaving them upset, frustrated and bewildered.

Our brain calculates the tiny time-difference between sound arriving at one ear and the other to work out where the sound is coming from., but a child with a unilateral implant can’t do this, since only one ear is sending signals to the brain.  They can hear a car coming but don’t know which direction it’s approaching from, and this brings its own dangers for a child with a unilateral implant.

Bilateral (two ear) Cochlear Implantation addresses all of these problems.  Bilateral cochlear implantation for profoundly deaf children is International best practice and has been recommended by the NICE guidelines, to which Ireland has subscribed since 2009.  Yet, current policy in Ireland, dictated primarily by funding, is to provide only one implant, which is like giving a short-sighted child glasses with only one lens.

Addressing this issue is urgent.

For a cochlear implant to function, the hearing nerve must be intact and operative.   Like any other part of the body, the hearing nerve will atrophy and die unless it is stimulated.  In the same way as the brain will ignore the visual signal from a lazy eye that is not corrected, the brain will learn to stop looking for a signal from a non-hearing ear.  Nerve tissue once atrophied cannot be re-generated and for this reason there is a time limit on when a cochlear implant can be successful; the younger the child the better (assuming there are no further complications).

Late implantation is of little use if the brain has already learned to accept a signal from one ear only as it will continue to ignore the new signal once this process is learnt.  Time is of the essence.

For my daughter, the chances are it is already too late for her to get the full benefit of a second implant.  This situation cannot continue for those children for whom time has not already run out, and those who are coming after.

Happy New Ear is a group of parents campaigning to get Government to fund bilateral (2) cochlear implants for each child that needs them.  We were represented in the Gallery in the Dáil this week for the reading of budget 2014.  No mention of cochlear implants!  The Minister has three weeks to lay out his budget, or in other words to confirm how he will spend his Health budget allocation.  In three weeks we will know if our campaign has been successful.

Yesterday, the issue of bilateral cochlear implants was discussed as a Private Member’s Motion.  We were hopeful for a positive outcome but the government voted against the motion, as a block.  The Minister needs to be reminded how important this is.

Providing two cochlear implants is a cost-effective practice.  Front end investment ( the cost of a second device per child) is far outweighed by the savings in rehabilitation and support services required by these children.  All research shows that bilaterally implanted children catch up with their hearing peers in  speech, language and communication skills far faster than unilaterally implanted children.  Their need for supports like speech and language therapy, resource teaching, and special needs assistants is far reduced by starting with bilateral hearing.

The cost of the second implant is €18,000.  According to today’s newspaper reports, there are currently about 200 children who could benefit from bilateral implantation (and clearly new cases will continuously arise).  €3.6 million would clear this backlog and while this might seem like a lot of money, it is tiny compared to the health service budget.

Remember, this is the government that pays TDs based within 25 km of Dáil Éireann €25,295 tax free expenses per annum to go to work.  Who else gets that to go to work?  This is the country with a state agency, Forfás, which will fork out a total of €20 million in rent for a building it does not use by 2034 (last year’s rent was €990,000, equivalent to about 15 % of the agency’s staff costs for the year)!.  As a society, we happily fork out €32k for attending fire alarms in a derelict hospital due to a faulty alarm system.

As a nation we have the money to do this, if we have the will to do it.  It is all about priorities!

Anyone who wishes to support this cause can go to the Facebook Page .  On the FB page there is a template, which may be personalized, to send to Minister Reilly voicing support for this cause.

We need all the support we can get so that the outdated unilateral cochlear implantation practice can stop NOW!

  14 Responses to “The Case for Bilateral Cochlear Implantation for Profoundly Deaf Children”

Comments (13) Pingbacks (1)
  1.  

    Please excuse my obstinacy in not connecting with facebook in any way no matter the seeming necessity.
    Would you consider putting up a Google+ page also linked to that template letter where I could assist as requested?
    Thank you.

  2.  

    for fucks sake, go to England or Wales or Scotland, my 4 year old had cancer and the Gobshites in Tallaght had her written off and thank be to fuck the hospital here in England have her to rights.

  3.  

    Hi Kerrtgot, delighted to hear your daughter is doing great, that is wonderful news.

    The problem is we can’t travel, it would be the same as having a pair of glasses with one lense fitted in England and one in Ireland, and asking a child who cannot communicate to tell them how it feels. There would be no support in Ireland say if the implant mic malformed and the buzzing sound needed to be fixed urgently. If travelling was an option, this fight would not be happening on the scale that it is.

    Journeymans- I’m attaching the template now-
    Lorraine
    Happy New Ear.

    To james.reilly@oireachtas.ie
    Subject: Bilateral Cochlear Implants.

    Minister Reilly,

    I am writing to you to ask you to ensure funding is allocated for bilateral cochlear implants in Budget 2014.

    We know the Government understands the urgency and importance of the issue and hope that they will act accordingly.

    Lend these children who have yet to gain speech your voice in support. Be the voice for them now so they can have a better future.

    This is a wonderful opportunity our children have to reach their potential. This is a wonderful gift you can give them.

    Please, please don’t let them down,

    Your name
    Your phone number (optional)

  4.  

    Kerrgot, I too am happy to hear your daughter is doing well. I assume she can hear well and therefore respectfully suggest that you might want to moderate your language and set her a better example of how to express herself coherently.

  5.  

    Thank you.

  6.  

    Good luck with the campaign, we should be ashamed as a society that TD’s travel expenses takes precedent over children’s quality of life, especially when they know it is cost effective to sign up, but of course that is past the next election…. Cynical maybe, true absolutely.
    Ask them at the doors when they come knocking next year, while they spend the €14million election campaign fund, instead of spending €3.5 million.

  7.  

    This is the response received Sunday evening from the Minister’s department’s bot;

    I acknowledge receipt of your email. Your correspondence will be brought to the attention of Dr James Reilly T.D., Minister for Health and to the relevant officials in the Department of Health. If the content of your correspondence relates to the functions of another Minister’s department, it will be brought to their attention for direct reply.
    Yours sincerely,
    Constituency Office of Dr James Reilly T.D., Minister for Health
    Unit 3, 1st Floor, Chamber Building
    North Street,
    Swords,
    Co. Dublin

  8.  

    Lorraine, thanks for posting the template – I was unable to post here for a while.

  9.  

    Kerrtgot, I hope your girl continues to get on well. I am glad you got the treatment you needed for her!

  10.  

    Proud CI Man. Please refrain from instructing other users of this site on their language. That is not your place. Decisions about the appropriateness of the language will be made by the site owners, not by you. Many thanks for your cooperation.

  11.  

    Journeymans – thanks a lot for send the email.

    It is interesting that the response comes from Minister Reilly’s constituency office, rather than from the Ministerial Office! Mine was the same.

    Maybe that is normal for any correspondence with a minister – I don’t know,

  12.  

    This has been noted as far away as New Zealand (not bad in less than 48 hours):

    https://www.facebook.com/2ears2hear/posts/658613867502303?comment_id=6783560&ref=notif&notif_t=comment_mention

  13.  

    Minisaters in government are particularly adept at obfuscation so it surprises me not one whit that the ‘error’ is built in from the off.
    Does not augur well for achieving your goal though.
    I’m a pessimist in any matter connected with the Dáil.

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