Meet Joe…

Meet Joe Campbell (if you haven’t already done so)…

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Joe is our eldest child; our first-born son.

The reason we don’t talk about Joe in our blog (much to his annoyance) is that Joe has perfect (albeit selective) hearing. When Joe was born to the world I’m not entirely sure I had ever (knowingly) even met a deaf person. I’d certainly never considered that he would end up being the ‘odd-one-out’ amongst my children.

Joe, like all my children, is a star. He is bright, charming, witty, funny, polite and handsome. Everything you could want in a son. I am so very proud of him. Joe likes rock music, playing the drums and rugby. From his early days where Joe was capable of tripping over his own feet and, after four years of hard work, Joe is blossoming into quite the little rugby player; sticking his head where others fear to go and tackling anything that moves.

Why am I mentioning this I hear you ask? Well Joe is nearly nine years old and, in England at least, this means he has started playing full-contact rugby. If his rugby future is anything like my rugby career, this mean endless trips to A&E and a list of broken bones I’m not proud of.

I am a huge rugby fan. I have dragged my children around the country and have force-fed them rugby from when they were only weeks old. Joe, Alice and Ollie are familiar faces at Harlequins and, whether it’s because of the sweets or just the chance to spend some time with Daddy, they never turn down the opportunity to come along. When Joe was born, there was no doubt in my mind that he would be a future England Captain (along with all my other friends’ sons) and when Ollie arrived, he was earmarked to take over when Joseph retired….

And herein lies the problem. Ollie is deaf and bescause of the decisions we have taken, Ollie has electronics in his head. Whilst the decision will ultimately be ours in terms of the risk of Ollie playing rugby, his future, in this respect, looks (at the very least) complicated if not entirely clear-cut. various bodies (the BCIG and NDCS) have provided some guidance:

BCIG Guidelines

NDCS Guidelines

But at the end of the day, I may have to put these dreams on hold….

This is the first time I can see we will have had to make a negative choice for Ollie’s future  that is based on our decision to give him CIs….and I find that so hard to swallow. I know that various of Alice and Ollie’s CI team cringe when they hear what we let them get up to…boogie boarding with processors on, swimming in the sea and largely living their lives to the full; as we had always said, we didn’t want their deafness to define them or the decision to implant them to negatively change their lives….

I have no regrets at the decision. On balance, it’s a small sacrifice for the freedom we have given him. Ollie’s speech is coming on daily and he really is flying; the future looks very bright, but what will he do at school when others are playing rugby? what will he do when his big brother heads off on another rugby tour…?

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I’d love to hear from someone who has made it work.

Genetics…

Genes: Can’t live with them, can’t live without them….

We all have them; they make us unique, but we also share parts of our uniqueness with our children. A long time ago with very dodgy methodology, Alice’s Daddy and I came to the conclusion that having two ANSD children was our 1:10,000,000 moment. We’d prefer winning the euromillions but hey ho…..

So little Ollie was our defining moment and we decided to actually see if we could answer the final piece of the puzzle. Over 60 genes have been identified (so far) as causing deafness and over 40% of kids with ANSD (most commonly Otoferlin or Pejvakin mutations) have a genetic cause. The numbers increase almost daily, but still a large proportion of clearly genetic conditions haven’t yet been discovered. So in the interests of science and family we wanted to get our genes checked.

To get your genes tested you have to be referred to the genetics consultant in your region. He’s usually friendly and has a caring manner ( think of the number of awful conversations he must have to have). He’s a Jack of all genetics and clearly not a master of deafness, but hopefully he is one page ahead of you in the textbook. Hopefully.

The NHS doesn’t do testing for ANSD. The NHS doesn’t know where to do it and doesn’t like spending money.

The deaf community needs to help each other, so we blagged the contact details of a lady in France who can. How ridiculous is the system where parents know more than doctors?

Ollie’s blood was taken in October. In December we were told that not enough had been taken (red blood cells contain no DNA, so the vast majority of the blood sample is useless) in April. Alice donated 5ml during her last surgery and since then we have waited.

Last week we were invited in to see the Genetics Consultant and dared to dream of closure……But no…mis-filed forms, lack of family connection between the two Campbell ANSD tests and………wait for it……… Alice’s blood is still sitting in Tooting. So thanks – that’s rubbish, bureaucratic, lack of cohesive thought, rubbish…..thank God Ollie’s surgery wasn’t waiting on it.

But here’s the rub. If the cause of ANSD is genetic (err yes….) you know your child won’t grow out of it; they are stuck with it for life. Implanting at one instead of two becomes appropriate; it saves thousands of pounds in pointless audiology appointments and testing and gets good sound into our children earlier, leading to better implant outcomes.

So come on the NHS: Spend the money, get your proverbial arse in gear and start testing the ‘well ANSD babies’ like Ollie and Alice. While you’re at it, could you deliver a vial to France, otherwise I’m on a day trip…?

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