Deafness Will Never Hold My Boys Back

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I HAVE always wanted a family and even when I was studying to be a speech and language therapist, there was never any doubt in my mind that I wanted to work with children with communication difficulties.

I met my future husband at college, we married before completing the course, moved from Edinburgh to Merseyside and after a couple of years started to try for a family.When our son Cameron was born early he was a happy baby, calm and sociable. A joy to look after, he smiled at everyone he met.

When he was six months old, we found out I was pregnant again. We also realised that the trademark gurgles and babbling that had been such a part of his sociable persona were absent.

We saw more things that caused concern, for instance, preparing for a birthday party, a balloon burst but Cameron sat unaffected, grinning away and didn’t flinch.

He was referred for a test and doctors blamed his hearing problems on glue ear and recommended he had a procedure to insert grommets (small plastic tubes) into the eardrums.

My baby Campbell then arrived early like his brother. His first hearing test showed problems but I was reassured that it may have been the result of fluid from the birth that remained in his ear canals.

But he was retested and failed. Then Cameron had his operation and showed no improvement. When the boys were three and 18 months old, we learned that both our boys were deaf. They were both affected in their left and right ears and would need to start wearing two hearing aids as soon as possible.

We later found out they had a genetic condition called Pendred Syndrome because their dad and I each carried specific genes. Pendred Syndrome can affect people’s hearing to varying degrees but it is generally a progressive hearing loss, in which residual hearing can deteriorate over time.

When Campbell was nine months old, we had to decide whether to give him cochlear implants, surgically implanted devices that send electric signals to the brain. They also contain magnets which attract the magnets of the external pieces to hold them in place.

With a cochlear implant, sound goes into the microphone on the external piece and is then converted into a special signal which is transmitted as an electrical message because the hair cells, which pass sound waves to the inner ear, have been damaged or destroyed.

This message travels from the speech processor directly to the hearing nerve via electrodes which have been surgically placed in the cochlear, and sound is then heard by the brain as a signal which it learns to recognise.

We were contemplating head surgery that would open up a pathway to the brain. The surgery carries risks from the anaesthetic and possible side effects such as facial nerve damage. In implanting the components, the surgeons would also destroy any residual hearing in that ear.

Yet without the implant, my baby could grow up as a healthy boy who used signing to communicate and never knew any different. I felt that by not doing the implant, I would not be able to face my son as a teenager and answer the questions he would inevitably ask about why we didn’t give him this opportunity. I couldn’t limit my child’s opportunities.

Campbell’s implant operation went ahead just after his second birthday. The operation went smoothly but afterwards there were complications. The area around where the internal component had been inserted into his head was not healing as it should and he had to have subsequent surgeries.

But within weeks he was copying sounds and trying to communicate using babble and attempts at words – and he hasn’t looked back. His progress has been phenomenal. To listen to him speak you would hear no difference in his speech compared to that of his peers. His cochlear implant has been a true success and well worth the angst.

However following his operation, Lee and I were finding it increasingly difficult to parent the children together as a couple. Our family scenario was so different to the one we had imagined when we started our life together. We separated and eventually divorced. I began caring for the boys as a single parent.

Then a year after Campbell’s surgery, the team at the Cochlear Implant Centre at the Manchester Royal Infirmary, where he had his operation suggested that Cameron, then aged four and a half, would also benefit from the implant.

The operation was successful but his first implant caused him intense nerve pain for the first 30 seconds after he put it on. However, one of the older deaf children in his school also had an implant. He started to give Cameron a wink or thumbs up when he saw him wearing his. Cameron was so proud of the attention and praise from this older boy that he started to wear his implant more and more consistently.

Today, Cameron, who has always been more reliant on sign language, switches easily between speech with his hearing peers and sign with profound deaf peers. He has had moments of questioning his life and its complications, saying things like “I don’t want to be deaf any more” or “I don’t want to have to change my batteries and miss out”. We talked it through and added humour to lighten the situation for him, pointing out benefits such as being able to switch off and shut his eyes to avoid being told off by his parents.

But Campbell has been using his cochlear implant successful for the majority of his life so he frequently identifies himself as hearing rather than deaf.

After meeting my second husband Matt, I waited a long time to have a third child. Partially because of the break-up of my first marriage, I was also waiting for the right time for our family.

I had to balance the boys’ needs and the time it took to support their development against the time and care a new baby would need. When Emma was born, she passed her hearing test. As a hearing child, she is in the minority in our family and while it’s natural for my boys to question why they’re deaf, it is equally natural for Emma to ask why she isn’t.

For us as parents it is about acknowledging and celebrating the differences which make our family what it is – unique and amazing.

Read the original article; written by the mother.

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