Jamie’s Journey – The Operation (part 4)

We went home, feeling really depressed, and not knowing what the future would hold for Jamie, or for us.  Hundreds of questions were running through our minds; how would Jamie know what we were saying? would he ever be able to talk? would we understand him? how would we communicate with him?  where would he go to school?  would we have to learn sign language?

Within a couple of weeks we had an appointment for Jamie to be seen by a specialist doctor in the NRB (National Rehabilitation Board), where we were told that Jamie’s hearing loss was so severe that he would probably never develop any comprehensible spoken language and that sign language would be the only option for us and him. Moulds were, very forcefully, taken of his ears so that he could be fitted with hearing aids at our next appointment.

The hearing aids were fitted about a week later (with Jamie putting up a huge battle and resistance towards them), they had a silicone ear-piece that fitted snugly into the ear, but from the very first moment they were fitted, a battle had begun.  Jamie hated them, he refused to wear them, pulled them out, turned them off, he just couldn’t bear having them on.  The doctor was less than impressed and insisted that he wear them from morning till night, every day.  We questioned how beneficial they were and she said they weren’t really but that they would have to be worn, just in case, there was any chance he might learn to listen and hear!

Just before the end of June we had a visit from the Visiting Teacher for the Deaf, Pat, who had been assigned Jamie in his work load and would be visiting him at home, once a week, every week, during school term.  His job was to assist us in developing language ability and listening skills.  He gave us great hope about the future.

Throughout the following year, we followed Pat’s instructions, on a daily basis, working with Jamie and getting him to develop some language skills – progress was terrible – we actually couldn’t understand how any progress could be expected when Jamie couldn’t hear anything at all.

We realised that we needed more help in communicating with Jamie, so Aidan, Yvonne and I enrolled in a sign language course (I was delighted when Yvonne asked could she do the course with us). We were also drawing pictures and using picture cards to help communicate  at this stage – we had pencils & paper with us, everywhere we went, and between us all we were able to get Jamie to either draw what it was he wanted or we would try and draw it for him till we got it right. (I became an expert at drawing JCB Diggers, tractors & combine harvesters then !)

We then got an appointment for Jamie to attend the Cochlear Implant Unit in Beaumont Hospital Dublin, to be assessed for a cochlear implant (CI). This is a small electronic device that sends an electrical message through a wire called an electrode directly to the auditory nerve and it can help profoundly deaf people to hear. It has two parts, a surgically implanted internal part and an externally worn part called a processor. The sound coming through the implant can initially sound unnatural and electronic, but over time, the brain adjusts to it. We had never heard of a CI before Jamie became deaf so we were very optimistic and open to finding our more about anything that might possibly allow him to hear again.

One of the criteria for Jamie to be considered was that his hearing loss had to be profound (which it was, his hearing loss was actually in excess of 120 decibels, in both ears) and not caused by meningitis (unless just very recently as meningitis causes hardening of the bones of the inner ear, making it unsuitable for the CI operation), Jamie hadn’t had meningitis so that part was fine.  The other thing was that he had to be wearing his hearing aids on a daily basis (this was difficult as Jamie was still very resistant to wearing them – they were being thrown down the toilet, into buckets, even into the fire – luckily unlit, Jamie hated those hearing aids).

The whole evaluation process for the CI took about 18 months – we would attend Beaumont Hospital on a regular basis, sometimes weekly, sometimes fortnightly.  He had a scan and a brain stem test done, and lots of other assessments to ensure that he was suitable for the operation.  Everything was going great – and eventually we were told that Jamie would be getting a cochlear implant. Jamie was three by this stage, and was scheduled to have his operation in April 1998.  I was pregnant with our third child then also.  The week that his operation was scheduled, our daughter, Aoife,  broke out in a rash all over, it looked like she had the measles.  We arrived at the hospital, as expected and when they were going through the pre-op routine, we told them about Aoife having a rash.  We were devastated when they said that they couldn’t risk doing surgery on Jamie in case that he had been exposed to a virus, as they would be operating so close to his brain and the danger of infection was too high for them to proceed.  They wouldn’t take any chances.

We returned home, and his operation was rescheduled for June.  We thought the time would never come for him to have it, especially as our next baby was due in early August and we wanted to have Jamie settled and over the operation before then.  Eventually the time came round again, and everything went as planned.  Aidan stayed in the hospital with Jamie, and went down to the theatre with him the next morning.  The operation took almost 4 hours (about the longest four hours of our lives!).  During the operation, all the internal components of the CI were fitted,  he had 22 electrodes implanted in his right ear (only one ear was being operated on).  After surgery Jamie’s head was all bandaged and he  had a drip attached, we felt so sorry for him, but knew that we had made the right decision for him to have the CI operation.  He was in reasonably good spirits and totally undisturbed by the bandages or being restricted to staying in bed.  He stayed in the hospital for almost a week after the operation.

When he was discharged we were given an appointment to return in four weeks time for the “Switch On” – where the cochlear implant would be programmed and the external parts would be fitted and adjusted to allow Jamie to experience the sensation of sound and hearing once again (we were so excited just waiting for this moment).