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Dublin: 3 °C Saturday 25 May, 2013

“It’s a shame”: Parents appeal for funding for cochlear implants

Parents are to hand a letter to Beaumont hospital calling on them to equip children with two implants instead of one.

A GROUP OF Irish parents has met with the HSE to call for it to release funding so that deaf children can be fitted with two cochlear implants – not just one.

Happy New Ear is a group set up by around 20 parents of children fitted with cochlear implants, and last Thursday they handed a petition to Liam Duffy, CEO of Beaumont Hospital, about the issue. The night before they were due to hand in the petition, they received a call asking them to send two representatives to meet with the HSE.

The group now hopes to meet Minister for Health, Dr James Reilly, about the issue, and says that Beaumont Hospital, where the procedure is carried out, supports them in their campaign. Hundreds of children are awaiting their second cochlear implant, with delays due to  a lack of HSE funding.

Happy New Ear

The Happy New Ear campaign began with a video made by a parent, Danielle Ryan, about her daughter Ellie’s story:



(drdanielleryandr/YouTube)

Speaking to TheJournal.ie, fellow mother Deanna Cairns said that her son Billy Cairns (4) has one implant, but that he and other children would benefit more if they had two. Cairns, who lives in Dundalk, has two older children aged 12 and 10.

She said that Ireland didn’t have routine newborn screening for deafness until 2012, so children like her son weren’t diagnosed until they were older. Cairns said that a lack of funding means that Irish children are receiving one cochlear implant instead of two, which parents have found is not beneficial.

She said her son “would be a prime candidate” and “definitely needs a second” implant. “When there is more sound around, they can’t locate where the sound is coming from,” she said.

Cairns said that other countries that offer these implants ensure children are initially fitted with two implants, rather than just one. “Why is Ireland so behind?” is the question these parents are asking, said Cairns.

Billy was diagnosed with profound deafness at 17 months. His parents were told he was a prime candidate for cochlear implants.

“If I had had my son in Newry, he would have been diagnosed straight away,” emphasised Cairns. If people do go abroad, to the UK for example, they have to deal with the hospital aftercare in that country. Cairns has two older children, so travelling abroad regularly with a young child for aftercare wouldn’t be feasible.  It is “very frustrating”, she said.

“He seems to be struggling”

Billy has had one implant now for nearly two years, but Cairns says that he is “not doing as well” as someone with two implants because he is not getting the full benefits.

He seems to be struggling. If I shout his name in another room, he will come running in to me. But he is just not getting enough for the speech to come.

Cairns believes that if her son had two implants, then this would improve his ability to pick up speech. But “it’s amazing to see” his progress to date.

He is coming along slow. They say it is a slow process. When you switch them on it’s like starting a child from newborn. He is trying to catch up on all of that.

Cairns said that parents whose children have one cochlear implant and are in mainstream schooling have said they “are coming home very tired” because of not having two. For now the focus is on getting the HSE to increase its funding for cochlear implants, to ensure that more children are fitted with two instead of just one.

“It’s just heartbreaking to see,” said Cairns.

This could be helped. It’s just a shame.

Read: Young Cork boy comes home after ‘bionic ear’ is switched on>

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Comments (21 Comments)

  • There are a lot of people who are implanted in the deaf community and are not opposed to it. There is no negativity bar from one or two people. I myself am not implanted, but I respect others who are implanted as I am not opposed to it. My beef is deaf children (planted or unplanted) not getting access to language and information. It’s important that they have that access in mainstream schools and society so that they can become fully formed individuals and are able to express themselves fully. I have seen some deaf children in mainstream schools ( in secondary schools) sadly being isolated and pretending to understand information in their desire to fit in with their peers. I also see so much pressure that some teachers and some parents have put on them thinking that they must hear perfectly because they are implanted, and these children finding it hard to explain what limits their implants have. It’s very important that these children have good confidence and good self esteem for later in life and this can only be achieved with good language- spoken or signed, or both. So remember- implants is not the issue its access to information that the deaf community has concerns about. Today in Ireland deaf people are not on equal footing in access to education or employment- implanted or not, oral or signed communication.

    Reply
    • I totaly agrree with you Michelle. There needs to be a total re education about what deafness is. All the different type of deafness and that each deaf person has different needs. This needs to happen from a young age for all children, travelling up to teachers, educatiors, decision makers, government bodies, medical professionals, other parents, employment, third level education and on and on…….. It is all about the different ways a deaf person choses to communicate. But the most important thing that someoone said to me recently and I think he is right is that that a deaf person must thrive in whatever method they chose. Its important to remember that no deaf person will manage to communicate at all times without other techonology, this is true for ISL users and as well as hearing aid users and Implant users. All will need support at some time in Life. Support of subtitles on Tv. Support of ISL interterpeter, real time captioning, note takers, Special need Assestents in school. Texing on a phone. It all about explaining the needs of the deaf child/ adult and getting the support. I remember my days in college where everyone though I could not be deaf because I speak, they believed that all deaf people dont speak. It was very hard to get support as it was a very hard view to change.

      Reply
  • Thank you so much for posting this for me, if anyone wants to help us with our campaign you can access us on Facebook : Happy New Ear , we need lots of help . Thank you

    Reply
  • Sorry Eoghan are you sure abuout that???? I am a deaf mother who has an implant. My 5 year old son is also deaf and was implanted 9 months ago. We are as deaf as any other deaf person and believe in deaf culture and in our deaf identiedy we just believe in CHOICE. As a parent I have to make so defficult one. The decision to implant my son. BUT he will alway be deaf. And with me as his mother he will alway strive to fiit into both worlds and he will. He will be a strong voice for the deaf community talking about disability rights and disability access as we all well know its very well lacking, eg the lack of subtitles on tv and in cinemas the lack of choices and support in education and third level. The lack of awarness on deaf issues. I have doen a lot in my time to promote deaf culture and deaf issues but I do not use ISL i speak but still believe there is a place for me and my son in the deaf community and we are still member of the deaf community and the deaf community have no right to discriminate against me and my son for the choices we make. My son is to young to make these choice. By the time he is old enough to make that choice it will be too late. What would I say to him then??? If he asked me why I did not implant him???? If he get older and decided that he doees not want the implant any more he can have it removed. Its his choice. But can you please quote me the figures of the number of people in Ireland that have had the the implant removed in later life or else where for theat matter?????

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    • Great post Julie. Keep fighting. People with special needs and special needs dependents need fighters like you.

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    • Thank you Declan it is post like the one from Eoghan that can make deaf people feel more lonely and like they dont belong to either the deaf world or the hearing world and that they are being force to make a choice. Its like we are being told that if you accept the implant you cant be deaf and you will be cast out of the deaf community. I would hope the deaf community would support choice and would see that my son has the best of both worlds. He uses a small bit of Irish sign language, he pointa and gesters and he uses spoken language. He is an all round deaf person and should be acccepted for who he is. I hate seeing this split in the deaf community and dont see it in any other area of disabitity where other groups come together to support each other and respect there different choice and accept that they still have the same disability in comom.

      Reply
  • Eoghan, we fully respect your view and this was a decision not taken lightly. However, it was a decision we had to make on our children’s behalf, because cochlear implants work best the younger they are fitted. We respect deaf culture and most of us are learning to sign and about deaf issues. This was a difficult decision and we respect your view. Thanks for your comment though. I won’t be commenting on any more moral dilemma issues as we certainly don’t want to fudge this issue- it is about our children having access to equal services as their European counterparts, not the decision to implant or not. I wish you well- Lorraine, Happy New Ear.

    Reply
  • This is relatively simple operation that can give a deaf person the gift of hearing. There are some quiet moving videos on YouTube that show the amazement and emotion of people hearing for the first time pist op.

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  • We have to remember that when politicians talk of hospital budgets they are talking about money available to treat sick people and when hospitals exceed their budgets it’s because they are treating more sick people. We can’t keep cutting the hospital budgets and expecting them to treat the same number of patients with the same standards of care. We need to step outside the paradigm created by the politicians – FG FF and Labour – and realise that hospitals should not be punished for overspending on an annual budget. It’s time to look at number of patients treated and cost per patient. There needs to be better ways of spending the 20 billion plus that the HSE has at there disposal. Cutting life changing treatments like the cochlear implants is not the way forward. It is said you can judge the development of a society by how it treats its children. If we stay on the road we are on with cuts to education and hospital services for kids as well as child benefit we will be in the dark ages very soon.

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  • Current waiting list for an appointment with a ENT consultant in Waterford regional if you request an appointment for a child is extraordinary.

    If your child is 85% deaf in one ear as a consequence of fluid in the Eustachian tube and requires grommets to address the deficit you will wait 4/5 years at Waterford regional before you are offered the opportunity to discuss the matter with a consultant. Then there is the waiting list for surgery to consider.

    Was informed yesterday that such a deficit in a child’s hearing is not a priority.

    It’s hardly a surprise that funding for a cochlear implant is not forthcoming. Government are clearly not concerned nor are they interested in a child’s welfare where such deficits are concerned.

    Reply
    • Hi My Dawg Barks Some,

      It saddens me to read posts like your about the huge waiting lists in hospitals to see ENT specialists. The government needs to inject a huge amount of money into E.N.T, Audiology and Cochlear Implants departments. Deafness is a disability that can and will effect anybody. It shows no mercy for the young, old, people with money or without. It is a hidden disability. It will effect most of us as we get older. Leaving a child go without treatment for glue ears can lead to long term deafness, the government is storeing up problems for the future. If they invested money now they would save money in the future. Both in future health costs and in education cost and in social welfare cost ect. I wish for all children that they could get the best treatment they needed, as quickly as possible. It is their future, let them live it.

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    • Hi Julie Anne

      It beggars belief. Was informed by a medical secretary that the catchment area is so large that there are not sufficient resources available at the hospital to cover the volume of traffic currently being experienced.

      Only solution available to us is to go private. The public system is clearly broken and in waiting to engage with it my child will suffer a hearing deficit that will become irreversible. It is exactly as you said.

      Politicians do not have their children on public hospital waiting lists, their children are seen instantaneously in a private setting, and as such waiting lists in the public system experienced by members of the general public have never been of any consequence to them.

      They don’t know it yet but I’ll be taking my pound of flesh from local representatives in my area and in turn will soon become a household name on the pay no mind list with employees at the department of health. I’ll sure as hell not go quietly off into the private system and give them a free pass on this particular experience.

      I have a head created and specially designed for bashing against bureaucratic walls. Not saying I’ll succeed but I plan on sharing my frustration in such a way as to ensure these bureaucratic nonentities share the ride with me. They don’t know it yet but the last thing they want is to remain in close and constant contact with this particular individual advocating for his child.

      I have a phone, an email account, a car and the legs to carry me to any office in the country. Most importantly, I have the time to make these, soon to be my very best new friends, a special project of mine.

      Reply
  • Is there any fundraising that can be done by ordinary folk here for the additional implants it’s a critical time in a child’s development .

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    • Yes Brenda time is running out for a lot of our children with the window for optium gain from two implants closing very fast. We would love for the people of Ireland to help us in any way they could and to donate any funds to Beaumont Cochlear Implant department.

      Reply
  • No no, we can’t let these innocent children hear, we have to make sure the bankers get there bonus and our politicians are paid well for the exceptional work they do! Lets not get carried away with what’s important and what’s not!

    Reply
  • In Sweden – the movie is about hearing parents with Deaf children about Swedish Sign Language and Swedish Spoken Language. With English subtitles. it is worth to check it… http://barnhorsel.se/ Enjoy watching it.

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  • A lot of Deaf people would not want to become hearing as its their life, culture & identity. Decisions are been made for children that the majority of these kids change in later life as they don’t want it. They take out the Coch implant and are happy to be Involved on the Deaf culture….it’s can be hard for parents knowing their child is Deaf but sometimes parents need to accept the way it is and think what the child will want in years to come.

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    • Wow Eoghan, that was breathtaking. It;s frightening to consider that you might have fathered children, or at the very least be capable of helping to create one.

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    • @ Eoghan MacLochlainn, whew! I have seen some pretty nasty stuff posted but this is truly the worst. You seem to be lacking in humanity and empathy. It may be that you did not mean to express yourself as you did.

      Of course, there should be two Coch implants and State funded.

      Julie Anne Cunnnen’s post is eloquent, moving and truthful. It says it all. Let the child decide later in life.

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    • The point is that nobody is forcing it on you.

      This is about choice, and – in a civilized country – people should have the choice to get a cochlear implant if they wish to do so.

      This is being blocked in Ireland by an antiquated medical system. I also believe that it’s partly down to the age old ignorance about deafness and the challenges that many deaf people face in advocating for themselves. Too easily ignored and written off by our society in Ireland.

      Reply

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