James was born with a profound congenital hearing loss of unknown cause.

His implants were received sequentially..

One day I read an article in the CICS Newsletter from a parent of a bi-lateral child, and immediately thought “what am I doing? Why hasn’t my son got two implants?” While the debate on the pros and cons of bilateral implantation continues, as parents, we felt the need to ask ourselves what the optimal treatment for our child was. As an advocate for our child, we felt it important not to be guided by what is available or what is the status quo. We needed to decide what would maximise the effectiveness of our child’s opportunity to access sound. For us it was obvious: two would be better than one.

Two implants probably improve the acuity of James hearing. By that I mean his audiogram is probably better under test conditions. But for us this was a minor reason. What two implants undoubtedly give James is improved performance of his hearing in a wider range of situations and circumstances. It gives him a more reliable and robust ability to perceive sound and language. It gives him more useful hearing in social and difficult conditions.

James had originally been prescribed hearing aids by the Royal National Throat Nose and Ear Hospital in London but they promptly refused further care for his aided ear, as soon as we were under the care of the Nottingham implant programme. Nottingham did not have the ability to care for James’ hearing aid. We were forced to go privately to get any assistance with his aided ear.

Following months of fighting our case, our PCT finally agreed to fund his hearing aid directly. When we decided to pursue a second implant for James, we called Nottingham immediately to see if this was something they could support. They said in theory that they could, but we had to get funding. We then called James’ GP and asked him to write requesting funding from our PCT. The PCT required our surgeon to write to them saying that in his view this was a necessary procedure, which he did. About six weeks later they agreed the funding.

Having had numerous conversations directly with the PCT myself about the refusal of the Nuffield to continue care for his hearing aid, I think they probably thought it was easier to pay for an implant and locate his care in one centre. Also, as we were being treated as an out of area treatment (OAT) and a tertiary referral to Nottingham was necessary, it might have been that different rules were applied.

Ask your GP and surgeon to write to the PCT. Speak to the PCT directly and collate as many independent research studies as possible.

2 years 7 months

His progress is amazing. He can now wear his new implant alone and converse at close to the same level as with his original. Last week James got a bad ear infection on his left hand side. He would not wear his implant for 5 days, saying it was too loud and “buzzy”, and it hurt. I was terrified and I thought that there would be a permanent problem. James is a purely oral child. He would not be able to cope for even the shortest time if he could not hear. I cannot express my relief that he had a second implant over this period.

We expect that James will gain the following benefits:

Head shadowing is minimised - this improves James’ performance with his friends when he sits in rows in classrooms or at parties. He can hear on both sides, so it effectively doubles his hearing performance. He no longer needs to position his friends on his left hand side! This is a key benefit; better hearing, more frequently, in more circumstances.

Better hearing in background noise - how often does your child have to hear in noisy conditions? James had great sound perception with one implant in an auditory booth, but a lot of his time is spent in very difficult acoustic conditions i.e. echoic rooms with tall ceilings and wooden floors. The research we reviewed showed better hearing for bilateral wearers in noisy conditions. We do not know what the limitations to his hearing will be yet, but hope that it will be improved compared to a single implant wearer.

Two is better than one from a practical perspective – how often does your child’s coil get knocked off or fall off? When this happens James has another and retains the ability to hear while he puts it back on, and so he misses less. Even more importantly, what if he can’t wear his implant for an extended period of time due to an ear infection. Taking this further; what if a device should fail? What if he eventually needs re-implantation? At least he will be able to retain his hearing for the long months these situations entail.

Localisation – we have not seen any indication that James can localise sound. We have no indication whether James knows that it is possible to localise sound! The research indicates that this is a benefit of bilateral implantation. Sound localisation is an incredibly useful ability. Not just from the perspective of safety in dangerous environmental circumstances but in all circumstances. James is often left wondering where a sound came from. His behaviour can be “vague” when he is unsure and can’t “focus” on the source of sound. In social and work circumstances, as he grows older, this is a skill that will become increasingly more important and we want him to be equipped with it.

When he was activated he did not initially like it, but due to a combination of being well prepared and a number of “games” that we played, he eventually kept it on from the third day. It was so much easier than the first one. We strongly believe that you need to teach a child to listen and that an implant or hearing aids are only part of the treatment. This entails a lot of hard work.

Since James was 10 months old, we have been visiting Jacqueline Stokes and following an Auditory Verbal program. For James and for us AVT was the best possible way to teach him to “listen” and “hear”. With the second implant it was like starting all over again! My heart sank at the thought of such an uphill struggle. He was wearing both implants all day. For short sessions he would wear only his new implant and we would play “sound games”, with the very specific objective that James was aware of i.e. we were teaching him to hear. Again, he had to learn sound by sound and he did not recognise anything at first – being unable to distinguish fundamental Ling sounds.

We talked with James about it ahead of the op. By the time we got an op date, James was 4½. We asked him:

“Do you like your hearing aid?”
“No”
“Would you like an implant instead?”
“Yes”

I told him I had asked Nottingham and as he was so good at using and looking after his implant, they had said yes. He didn’t stop talking about the second implant all week to everyone he met and was clearly excited, but he was also clearly too young to really comprehend all that was happening.

As an excellent user of his implant, he had the clear expectation that the new one would sound exactly the same as his current one did. We spent a long time explaining to him that when it was activated it would sound very different, but that we would practice and it would change from a sensation he didn’t recognise to ‘sounds’ that he did.

gave him the analogy that when I go to the optician and get a new prescription, I can’t see properly and don’t like it. I said that I need to wear my new glasses for a while and then I learn to see like before. It was all relatively smooth until he asked, just before falling asleep, how they would “put the magnet in his head”. I told him that that was what the surgeon did. He seemed happy with that.

Now, after more than two years with a bilateral CI, James says: “Two implants are much better than one. They are also a lot clearer than one. I can hear easier. When I first got my second implant I heard some buzzing, but after a few weeks of using two implants the noise stopped.”