Trying to make sense of it all

LET me tell you about a dreadful sod of an infection that I guess most of you reading this will have never heard of before.

Its name is cytomegalovirus - abbreviated to CMV - and, as far as I am aware, it remains without a cure.

Back in the mid-autumn of 2004, I became a Dad for a second time. Our second son, Joseph Anthony Snowdon, was born on October 13, a brother for Matthew, three years his senior.

Joseph weighed in at a very healthy 8lbs 3.5oz and I can vividly remember cutting his umbilical cord as I had with Matthew back in May, 2001.

All appeared well at first, and as our new-born son snuggled close to Louise in the recovery unit at the hospital, I thought everything was just perfect in our little world.

How wrong I was.

Within hours of Joseph's birth, we began to notice a rather disconcerting rash that was appearing on his little body.

And within a short amount of time we learnt, to our great upset, that he had been born with congenital cytomegalovirus.

What the hell was this condition and what did it mean for Joseph were our two primary questions. The answers we received were not the ones any parent wants to hear.

It's a virus that can be contracted by an expectant mother via a simple thing such as a cold and passed on to her unborn child without her knowing what has happened.

And the seed it sows produces a harvest of devastation for the child including problems with movement, below average head growth and sight impairment.

Joseph, to some degree or other, has these symptoms. He attended portage sessions for some time and throughout 2005 and 2006 we took him every Friday morning to Crosby High School for hour-long hydrotherapy sessions. His head size was measured many times at hospital and clinics and was found to be smaller than normal. And he was diagnosed as being long-sighted so accordingly he was prescribed to wear glasses.

Quite a lot, I think you'll agree, for someone still in their first years of life.

And then we come to the knockout blow.

What CMV also has the nasty ability to do is cause brain defects. In about 5% of cases it causes what is known as 'cerebral calcification'. This is when calcium, which usually helps in the development of healthy teeth and bones, for whatever reason, finds its way into the brain - and stays there.

Its presence was detected in Joseph's brain when he went for scans at an early age and it confirmed our worst fears about him - he had only partial hearing as the CMV virus had attacked his two cochlears. And on top of that, he was going to be delayed developmentally.

It was a crushing blow for all of us, not least Joseph who was completely oblivious to our upset. He was born into a world with little or no sound so he knew nothing else. And the way he moved was just his way.

Over the years since his birth we have attended countless medical appointments, hospital visits, information classes and clinics.

In the summer of 2008 when Joseph was approaching his fourth birthday we made the biggest decision of all. He underwent a near three-hour-long operation in Manchester to fit a cochlear implant on his weakest ear, his left one. The hearing aid he wore there was not giving him much in the way of sound support and the advice we were given, and took, was that a hi-tech cochlear implant would give him the best chance of improving his speech and language skills in his crucial early years' development.

It was a decision neither of us took lightly, but we agreed it was the right one to take for Joseph given all his other problems.

Thankfully, the operation was a complete success and a few weeks later, the device was switched on.

Considering the implant was hooked up to a backpack to be worn underneath his clothing on a set of reins, remarkably Joseph took to wearing it pretty well from the start. In tandem with his hearing aid on his right ear, Joseph began to become accustomed to the new sounds it produced for him.

And thanks to a wonderful team of speech and language therapists who worked tirelessly with him, Joseph increased his vocabulary week after week.

Academically he was allowed to follow Matthew into his mainstream school and to date is approaching the last few weeks of life in Year 3.

It hasn't all been plain sailing, though. Joseph's poor social skills and delayed development in a range of areas have had a profound impact on his life and those around him. He finds it incredibly difficult, nay impossible, to express what he is feeling to us and his peers. And, sadly, this often manifests itself in violent behaviour that, at the root cause, he is not truly responsible for. It's that bastard of a virus I mentioned right at the outset.

Things are tough right now, very tough.

Thank goodness that we - and Joseph - are receiving support from a whole range of sources from the medical world to his schooling and family therapists. Their work with him and us has been extraordinary although their tasks are still a very, very long way from being completed.

Joseph could be classed by some people as a problem child.

He isn't.

He is a child who has problems.

I wish to God he had never been born with them, but not for one minute have I ever wished he had never been born.

Like his elder brother, I love them to pieces and I'm just so sorry for him he has had to contend with this condition throughout his near nine years on this earth.

I'm still trying to make sense of it all - but to be truthful, I can't.

All I know is we'll  love and care for him as long as we can - and that's the only thing that really matters to us.