Parents of deaf baby told to wait 5 years for care

A deaf toddler’s family has effectively been told to either emigrate or wait five years for the life-changing care needed.

The parents of 9-month-old Benjamin Fellowes revealed the situation after learning there are no plans for him to be given a bilateral cochlear ear implant.

His mother Rachel, an emergency medicine doctor from Skibbereen in West Cork, said she and her husband Stephen were told within weeks of his birth tat their second son had hearing problems.

Born in February, he was found to be profoundly deaf in both ears after under-going checks as part of the recently introduced neonatal screening programme.

At 14 weeks, Benjamin was given hearing aids as a stop-gap measure and is due to receive one cochlear implant next spring.

However, while specialists hope more funding may be made available next year should Beaumont Hospital’s plea for extra finances prove successful, they said even this slim possibility may not be able to help the toddler.

Any extra money transferred for the implants will be used firstly, it emerged, to clear the longest backlogs — which has 350 children awaiting the vital service.

As such, Benjamin’s parents were told even a best-case scenario could see their son wait for the treatment — considered international best practice — for five years.

Dr Fellowes said she and her husband are considering emigrating to Britain, where the full bilateral service is provided via the NHS.

“We don’t have many options,” she said.

“We haven’t really thought about going private because it is very expensive and Beaumont is purely a public service so it’s not really an option.

“My husband is from Belfast so we could get it in the UK but that would mean emigrating.

“The operation is only the beginning, so if we get the surgery in Belfast or elsewhere, the follow-up would have to be there as well. We are delighted with the initial service, the screening picked up on Benjamin’s hearing difficulty very quickly but the hearing aids are doing nothing for him. He should have the best service.

“Being a doctor myself and working in the system, I’ve seen the excesses and waste of money going on.

“We’ve only a small window of opportunity to get the best treatment if everything goes well to get Benjamin into mainstream school. It is an awful situation where we are still short of international guidelines.”

* In tomorrow’s Irish Examiner: Liam Cunneen- McCormack’s profound deafness was misdiagnosed for 17 months.

Sense of sound

Cochlear ear implants are surgically implanted electronic devices that can provide severely deaf people with a sense of sound.

They are targeted at people whose deafness is not caused by damage to their cochleas — the auditory part of the inner ear.

The devices particularly benefit adults who became deaf after learning spoken language, and very young children.

The success of the procedure in children depends on the age at which the patient has the implant, with a 2010 US Department of Health and Human Services report stating children who receive the help after a tight timeframe has passed will see the benefit seriously diminished.

Cochlear ear implants do not lead to “natural hearing”, but instead result in a better grasp of speech and processing of certain sounds.

However, when only one implant is provided, patients can be affected by “cocktail party syndrome”, where they can find it difficult to decipher the noise being heard due to a lack of sound balance between ears.

Examples of where this can cause problems include crowded areas and crossing through traffic, as the person can struggle to zone in on where noises are coming from.

The implants include microphones to pick up sound, speech processors to prioritise audible speech, a transmitter coil placed behind the ear, a receiver and transmitter surgically placed in bone beneath the skin, and a series of electrode cables linked into the cochlea.

‘We have to settle for substandard treatment’

Sir

Our second son, Benjamin, was diagnosed as having profound bilateral sensori-neural hearing loss at his newborn screening in February this year.

He was fitted with hearing aids at 14 weeks and we were referred to the cochlear implant team in Beaumont armed with reams of information, including the guidelines of the National Institute for Health and Clinical Excellence in relation to hearing loss and cochlear implantation.

These guidelines state, based on international research, that children with Benjamin’s type of audiogram should have bilateral implants.

However, when we arrived in Beaumont to speak with the cochlear implant team, they informed us categorically that they would not be doing bilateral implants, nor would there be a prospect of getting a second implant in future. This is solely due to a lack of HSE funding.

I am a non-consultant hospital doctor who graduated from UCD in 2005 and who has chosen to stay in this country and work in the public sector.

Over the years, I have witnessed first-hand some of the shameful excesses and wastage of money by this organisation, with copious anecdotal evidence to prove this beyond doubt.

You can therefore understand my utter disgust at being told we are going to have to settle for substandard treatment for my baby son because of a lack of funding.

Research shows that to do two implants simultaneously is far more cost-effective than consecutive surgeries, and there is irrefutable evidence that bilateral implantation leads to much improved listening and verbalisation for even profoundly deaf children.

Other cochlear implant centres in the US, Australia, and the UK (as near as Belfast), are on target with the NICE guidelines, but of course this is Ireland, where we are last with everything.

By no means do I wish to sound ungrateful. We are delighted that the newborn hearing screening has been implemented, albeit over a decade after its introduction in the UK.

Our now 9-month-old is on track for unilateral surgery in February (assuming there will be a bed and operating slot available, and that the HSE will have replaced the two cochlear implant speech and language therapists who will be on maternity leave).

However, it a shame that the programme is financially hindered from offering the world-class service is it capable of providing.

My husband is from the UK, and it would be relatively easy for me to apply for a post there and for us all to pack our bags and go.

Benjamin would get his bilateral implants and access to all services within a much more accessible distance.

Hoards of my fellow graduates have already left the country in pursuit of better training and working conditions. But then, the HSE would be minus yet another doctor who was trained by taxpayer funding and the Government could say goodbye to my financial input.

I would appreciate if action could be taken on this matter post haste by the relevant parties, as it is a matter of urgency for babies who have been diagnosed early, that they can progress with the best possible treatment.

Yours sincerely

Dr Rachel Fellowes



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