Mums Who Inspire: 'He is a busy two-year-old and trying to keep his magic ears on is a challenge'

Mayo mum Orla Freeman is married to Shane and has three boys: Ruairi , seven, Darragh, five, and two-and-a-half-year-old Eoghan. 

A happy family, Orla's life changed when her youngest son failed the Universal Newborn Hearing Screening test.

MagicMum sat down with Orla, who blogs at Our Own Journey, to share her family's incredible journey as part of our Mums Who Inspire series.

Here is her story in her own words: 

The first hearing screen test which Eoghan had was called an automated oto-acoustic emission or AOEA when he was two-days-old.

A small soft tipped ear piece was placed in the outer part of the ear and clicking sounds were sent down.

When an ear receives sound, the inner part, known as the cochlea, usually produces an echo. The screening equipment can pick up this echo.

In Eoghan's case, however, no echo was picked up. At this point I was not alarmed or concerned as I thought he just had fluid in his ears after delivery.

We were called back to the hospital a week later for the same screen test to be repeated. Once again, the screen test produced the same result – no response from either ear.

Again, I was not overly-alarmed; we have no family history of hearing problems and I had a healthy pregnancy with no complications.

We were referred to the audiology clinic when Eoghan was three-weeks for a second test called automated auditory brainstem response (AABR).

This measures activity in the auditory nerve and brainstem in response to sounds. Three small sensors were placed on Eoghan's head and neck.

Soft headphones, specially made for babies, were placed over his ears and a series of clicking sounds were played.

The hearing screening equipment measures how well a baby’s ears respond to sound. 

Eoghan, again, had no response at all. At this stage we were told he had significant hearing loss.

The audiologists wanted to repeat the test again and wanted to involve an ENT consultant.

And when Eoghan was approximately six-weeks-old, we were officially told that he had a bilateral profound hearing loss. He was in a complete world of peaceful silence.

In the first 12 months, we had over 141 appointments.

These included audiology, physiotherapy, occupational therapy, optimology, paediatrics, speech and language, teacher of the deaf, sign classes etc.

An intensive examination was carried out on Eoghan to see if he had any other issues or if the cause of his deafness could be found.

By the time he was two months he was fitted with his first hearing aids.

However, because of the profound loss, he was referred to the Cochlear Implant programme in Beaumont Hospital straight away.

He was assessed for a cochlear implant operation during his first year, and at 14-months was operated bilaterally.

He was switched on a month later, and we carry out therapy sessions including speech and language and physiotherapy on a day-to-day basis.

Eoghan's balance had to be self-taught as he was born with an enlarged vestibular aqueduct as well as deformities in his inner ears, and we've had to do physiotherapy on a daily basis since his diagnosis. 

The implants create the auditory pathway to the brain.

And we have to make sure he wears them as much as possible because he has a small window to develop an auditory memory.

As you can imagine, he is a busy two-year-old and trying to keep his magic ears on is a challenge.

If a child does not gain access to sound and speech by five their chances of gaining speech is very limited.

Therefore, keeping the magnetic coils on his head is a priority so he has as much exposure to sound and language as possible.

As well as looking after the equipment, we have to provide Eoghan with a good listening environment.

This is making sure there is not too much background noise, that we take it in turns talking and that we face Eoghan when communicating with him.

We attend speech language therapy both locally and in Dublin. We have to take what we learn in these sessions and do it on a daily basis at home. This is often through play and daily routines.

The most important thing is that Eoghan is exposed to as much language as possible so we talk, talk, talk all day long.

We can never be guaranteed if Eoghan will ever achieve speech so we use a total communication approach: we use sign language as well as speech.

We started to learn sign as soon as we got Eoghan’s diagnosis. We now have a home tutor who comes to our house every week to teach the whole family sign.

As a family, we had to adjust our ways to learn how to communicate in a new way.

Each day we are mindful to ensure Eoghan is involved and that he understands what's going on.

Sometimes this can take time and lots of patience trying to get the message across.

Likewise, it can take us time understanding what Eoghan is trying to communicate to us.

Two years on and we still have weekly appointments.

Thankfully, however, he is making wonderful progress and surprises us every day with a new sign or sound.

His independence grows daily and, as a family, we see the efforts that we are making come to fruition. 

Not only is Orla's attitude to how she embraces Eoghan's disability inspiring, but so is her desire to help those who find themselves in similar situations. 

Explaining why she decided to share her experience in a blog, the mum-of-three told MagicMum that she wants to reach out to parents that feel vulnerable after any diagnosis; to let them know that they are strong enough to deal with anything.

Eoghan has surpassed all the doctors expectations even at this early stage. We went from no hope of him ever hearing (even after they implanted him they thought it would fail) to seeing him progress each day in a way we were told would never be possible.

I want our journey to inspire other journeys that people unexpectedly themselves in.

Eoghan has allowed me to see the best of human kindness. I have experienced that kindness and human goodwill like I have never experienced before. My youngest son has brought our family into a beautiful comfort zone where we embrace difference.

My eyes have been opened – I see the world so clearly and empathise with it like never before. I lost absolutely nothing the day Eoghan was born but gained a richer and more fulfilling life because I never take anything for granted now. 

Eoghan has made Shane and I a stronger mummy and daddy. He has given his brothers a natural empathy towards children and people who are different.  He has changed our lives by bringing out the best in us.

If you have a story that you would like to be share, email mumswhoinspire[at]magicmum.com.