Is testing the right choice?

Today I had an MRI scan and as I lay there in the tunnel listening to all the loud noises I reflected back on how incredibly brave my little man is and how he’s been through so many tests at such a young age.

You wouldn't think that being deaf could link to so many other medical conditions and the amount of tests that would be needed. The tests are all optional and investigate the causes of hearing loss. As a parent you can choose whether or not to put your child through these tests.

As the cause of hearing loss was unknown for Kenzie we chose to have tests. We wanted to see if we could find the reason why this happened, be fully prepared for what the future may hold and be able to give him every possible opportunity in life.

It all started at the newborn hearing screening where they test your baby’s hearing after birth, Kenzie had this test a couple of times while we were in hospital and they all came back showing no reaction.

This then led to further testing in the audiology department where wires were attached to Kenzie’s head and they tested different sound levels to see the severity of his hearing loss. This is when we found out he was profoundly deaf. This was one of the hardest days of my life, the day that our lives changed forever.

Following this Kenzie had an MRI scan. Luckily as he was only a tiny baby I held him in my arms and rocked him to sleep. Once asleep I laid him on the bed where they packed lots of sponge around his head and positioned him in the head rest. I then watched while he was taken into the tunnel. His tiny little body disappeared, it was so difficult to watch and I stayed right by his side the whole time. His tests lasted about 20 minutes, although it felt more like 20 hours!

On Kenzie’s first birthday he spent the day in hospital where he was put under general anaesthetic and taken for a CT scan to check the condition of the cochlear and see whether he would be able to have cochlear implant surgery. He has also had ultrasounds and ECG scans as kidney and heart conditions can be linked to hearing loss, which is not something you’d ever even think about. Luckily for us, Kenzie’s tests were all clear.

Kenzie has also had blood taken and sent for genetic testing. This is how we found out that the cause of his deafness was Pendred syndrome. This means a chromosome of mine and a chromosome of Kenzie’s dad came together to cause the hearing loss.

He had surgery for his cochlear implants in January this year where he went under an invasive six-hour operation to have his implants fitted.

Lots of people will question our decisions to put Kenzie through these tests at such a young age and also question our choice of putting him through the six-hour surgery to have his implants.

These decisions are not taken lightly and I have spent many nights awake questioning myself and whether I have done the right thing for Kenzie putting him through so much. The hardest thing is also knowing that you’re making these decisions for him, and wondering if he could choose himself, would he choose to do this?

But when I look back now and look at the amazing little person Kenzie has become I know that every test was worth it and every decision made has been the best decision for Kenzie.

We have proved that deafness doesn't need to be a disability and it doesn't need to stop you achieving anything you want to achieve. Kenzie is an amazing, funny, cheeky little boy who loves life and is a role model for others.

When I watch him talking, singing and dancing to music it makes me smile and when he has his development tests and they show how clever and advanced he is I take a big sigh of relief knowing I have made the right choices for him.

Just because we chose this path for Kenzie doesn't mean it’s the right path for other families. Each parent has to make their own choices and do what's right for them and their child.

I can’t wait until Kenzie is old enough to share his experiences with you all himself and share his journey through his eyes.

I love you to the moon and back my incredible little superstar!