Sarosha was born in July 2000 with a profound congenital bilateral hearing loss of unknown cause.

She received her first implant in May 2002 and her second in April 2007, self-funded by the Byrnes following a number of unsuccessful appeals.

We feel it is important to maximise Sarosha’s opportunities for listening; remove barriers between her and the hearing world; give her the chance to localise sound and improve her perception of speech in background noise. These are important for her educational, work and social life. We had always wanted to maintain a hearing aid on her unimplanted, side but that was hoping against hope because she really has zero residual hearing and she pretty quickly rejected the hearing aid.

Aware that bilateral CIs were fast becoming the norm in other countries, we first tried for PCT funding for a second CI in 2004, with full backing from our CI centre and surgeon, but were turned down. Armed with more evidence of the emerging benefits of why it is good to have two ears (or two CIs) to hear, and again with our surgeon leading the request, we pressed the PCT again in 2006. The PCT turned down the case once more. There then followed further to-ing and fro-ing, including steps to take a judicial review action against the PCT. Our experience of all this is that PCTs have little accountability for their decisions. They can operate in a ‘post code lottery’ world of inconsistent decision-making where similar or identical cases get different funding outcomes and there is, in effect, little legal redress. Along the way, we've faced a lot of stress, and I think I can honestly say that various stages of the fight for funding have been just dreadful. I would not wish this on any parent.

It really is a postcode lottery. I don’t think our particular PCT would have ever funded in the absence of a NICE go-ahead and, indeed, they have even turned down a family whose child was deafened through meningitis. Having the surgeon and the CI backing your case is crucial. We also submitted a note from Sarosha’s teacher of the deaf on the educational importance of binaural hearing and a summary of the research evidence in favour of bilateral CIs.

In early 2007, we gave up the fight and decided to fund the op ourselves. Two things were in our favour. First, our implant centre at Nottingham had just decided to begin doing private cases which they had not done before. This removed the potential headache of going to a different centre. Second, we were in the fortunate position of being able to fund the op ourselves. We expect the total cost, including the internal and external device and eight ‘first year’ tuning sessions, to be between £31,000-£32,000 (*). It is a hefty sum but we took the view that it is a few more years on the mortgage for us, but a lifetime of better hearing for Sarosha. It is little more than a £1 a day for the rest of Sarosha’s life. It is a great investment and would have been a worthwhile investment for the NHS had our PCT taken the same approach as other more enlightened PCTs dealing with similar cases to ours.

Seven months.

Sarosha’s speech perception using the new one alone is very good and, indeed, seems nearly as good as her first CI. Sarosha herself says that having two CIs gives her better hearing, particularly detecting speech and voices. I have seen signs that her locational ability is improving although it is difficult to know whether this is the case or not.

Just under three weeks after switch-on, we went to Austria for a friend's wedding. Late on the Saturday night, the lead on Sarosha’s first speech processor coil broke. We did not have a replacement coil with us so she had to spend most of Sunday using just the new CI. This included travel back to the UK and a 3 hour delay at Munich airport. We found we were able to communicate through spoken language fairly well using the new CI alone. Successfully playing a game of ‘I spy’ in a noisy airport environment with the new one alone just weeks after switch-on felt like real progress.

From the word go, we made it clear that the expectation was that Sarosha would wear her implant all the time and that is what has largely happened, apart from a bit of arguing and a few times at first when she didn't wear it.

In the first week, we thought it would be good to try to spend a few minutes a day with just the new processor switched on alone. We tried this by reading a familiar book at bedtime. Sarosha would have both CIs on for the first half of the book and only the new one on for the second half. When I am reading a book, I play a game of ‘deliberate mistakes’. I quickly became aware that Sarosha was none the wiser to my attempts to turn ‘Father Christmas’ into ‘Father Easter’. Sarosha was not getting meaningful sound and described our speech as just a lot of 'beeps'.

At this stage, we felt pretty down in one way, but also knew it was early days. On the one hand, we were pleased she was wearing her new CI pretty much the whole time. On the other hand, we were having no success in getting Sarosha to do any focused listening with the new one on its own. Even worse, we had no idea what the outlook would be for her getting meaningful sound through it. We took consolation from the fact that she did report to her teachers at school that she was getting better sound now she had two CIs.

We then had a real turning point in the middle of the second week, thanks to the wonderful Jacqueline Stokes at Auditory Verbal UK in Oxfordshire (www.avuk.org). We had been going down to see Jacqueline and her colleagues from when Sarosha was aged 18 months to 4 years and attribute much of her language progress to auditory verbal therapy (AVT). It felt quite nostalgic going back again. With her usual fun approach, Jacqueline succeeded where we had failed and we did some AVT with the new CI alone. Jacqueline went through the ‘ling sounds’ (the basic sounds of speech). At first we felt relieved - there was confirmation that Sarosha was definitely hearing them but then it became apparent that, quite a few times, she was not detecting the actual sound - eeeees were turned into mmmmms (or something like that) on a frequent basis.

Then it was back to two CIs before returning to the new CI alone near the end of the session. This time round, the wrong detections were again evident but were strikingly less frequent. We came away from the AVT session inspired and armed with some ideas for putting AVT into practice at home with the second CI alone. Thankfully, it was half-term and in the following days, I got a chance to do more with Sarosha. This time she was really up for it and we spent an hour or so each day having great fun with ‘ling sounds’ and word detection. We called them our ‘right ear games’ using the new speech processor alone. We devised special ‘right ear treasure hunts’ and ‘right ear catching and throwing games’. A few weeks into this, we again tried reading a book at bedtime and, this time, Sarosha spotted all but one of my five ‘deliberate reading mistakes’. This was hugely different from just two weeks earlier.

We kept the ‘right ear games’ up for about four months after switch- on and still try to do them now but they are less frequent.

Sarosha was fully involved in discussions about whether she wanted a second CI or not and was always clear that she did. She had the opportunity to meet and talk with other children with bilateral CIs as well as discuss the procedure with the implant team. She says she can “now hear better with two CIs and hear people talking more clearly.”