Zach’s new world of sound

20170114_102036

An introduction to Zach

Zach is now 2. He’s a happy, playful and adventurous little boy. Zach’s had a challenging start to life. At nine days old he had emergency bowel surgery at Southampton General Hospital and then went on to have two more emergency operations on his bowels. He also had heart surgery to repair a large hole in his heart when he was six months old.

When we began to suspect he was deaf

I can clearly remember talking to a nurse who was caring for him after one of his bowel operations when he was 6 weeks old. I commented on the fact that Zach wasn’t responding to sound, she agreed with me. Once we got him home he had a hearing test at our local hospital which confirmed he was profoundly deaf. Further tests confirmed he had a condition called Auditory Neuropathy Spectrum Disorder (ANSD) – a real tongue twister! Simply put, this means that sound doesn’t travel to the brain effectively. We were told that without hearing Zach will never be able to access speech. This floored us. We were devastated. He had been through so much already, it just seemed so unfair. Zach began wearing hearing aids which were at full volume, but even then reaction to sound was intermittent and as he got older this reduced.

IMG-20170307-WA0006

Hello wonderful Cochlear Implant Team at St George’s Hospital

When Zach was nine months old we asked for him to be referred to the Cochlear Implant Team at St George’s (we had heard about this team through his Hearing Impairment Teacher). This referral triggered a year of assessments carried out by the Cochlear Implant Team. These included hearing tests and speech and language assessments. The purpose of all of this was to see if Zach was a suitable candidate for Cochlear Implants. CT and MRI scans confirmed that he was suitable for the surgery.

Wednesday,10th August 2016 – Family Meeting

At the end of a busy year of tests and assessments we were called to a family meeting to receive the lead consultant’s and his team’s decision. This would be the moment we would find out if our precious baby boy could have Cochlear Implant surgery and with that the gift of hearing and speech. We walked into a meeting room full of medical professionals. We felt apprehensive yet ready to fight our son’s corner. We needn’t have worried as it was decided that this was right for Zach. There are no words to describe how Mike and I felt. Our little warrior will hear, he will speak, he will hear us say “I love you”.

20161130_141603

Don’t get me wrong, it wasn’t an easy decision to make. There was a brief moment when I rather foolishly nearly put a stop to everything. The reason – “There is a risk of facial paralysis”. The consultants words were like a smack in the face. There’s a chance our Zach won’t be able to smile if nerves are damaged during surgery. To be fair to the consultant he was doing his job by making us aware of the risks involved, but this is rare and has never happened at St George’s. A few glasses of wine later and I saw sense. Zach will have Cochlear Implants. Bring it on!

20160827_201610

Friday, 13th January 2017

Yep, that’s right, Friday 13th!! The date of Zach’s surgery. It was a ridiculously long day. We kissed our little warrior goodbye and handed him over for surgery…again. Seven and a half hours later we were reunited with an irritated, thirsty and hungry toddler. The surgery went well.

Monday, 6th February 2017- Switch On Day

Off to St George’s Hospital we go! This is it! Zach had recovered from his surgery and was doing great. He was ready. We sat in a soundproof room with the best audiologist in the world (we think he is amazing) and waited for Zach’s first reaction to sound. The poor child leapt off his dad’s lap and cried in a way I have never heard before. In truth he was distressed. He had gone from a silent world to this new thing called sound and he wasn’t too impressed. He didn’t like us very much and he certainly didn’t like the poor audiologist. This sounds awful, I know, and I struggle to watch the footage of that moment, but believe it or not this is excellent. We were warned that he may cry.

He is getting the full range of sounds and frequencies hence his dramatic reaction at switch on. The days that followed were hard and emotionally draining. He continued to cry when we put the speech processors on. We were told by the audiologist to be strong “We move forward now” were his exact words. Our normally gentle audiologist never sounded so stern! Although it was a difficult time, we were reassured by the audiologist that it would get better and this was the right thing for his development. As a family we had to fight the urge to give in and take them off. We all just wanted to scoop him up and make it better. We supported each other and persevered. We knew Zach needed this to “move forward”.

Life with his speech processors

Once you get over the fact that there are magnets in your childs head that the speech processors attach to, then these are straight forward to manage. Zach can be a pickle and has figured out that they come off when he rubs his head against things. That’s why he now wears a special headband and yes he does look like something out of the ‘80s, but it helps to keep everything safely in place.

Magical moment at Digbies

Mike and I realised that persevering in those early days after switch on were starting to pay off. We had this wonderful realisation at Digbies. As always, we would all sit in a circle on the floor and sing & sign together. Zach used to be oblivious to what was going on when this happened and would do his own thing despite my efforts to include him. At his first Digbies after switch on we sat in a circle to sing songs and Zach sat up and listened. He was listening! He smiled at all of us. He was listening (yes, I said it again). Everybody commented on the positive change in Zach. The lovely thing about our fellow Digbies mums, dads and therapists is that they’ve seen the before (profoundly deaf Zach) and that they are a part of this journey and will witness Zach as he embraces this new world of hearing.

FB_IMG_1488825667818

Today

Three months after switch on and he is doing well, reacting more to sound as he learns to listen and communicate. He is attempting to mimic us. For example, he will attempt to say (sound) ‘Ready, Steady, GO!’ and ‘Bye Bye’. There have been several visits to the audiologist at St George’s and each time there has been a volume increase. Zach is almost at full volume which will be reached in the next few weeks. He still has a lot of work to do, but he’s doing it and having fun! He is now starting to associate sounds with actions, people etc. WOW! What a journey, but this has been a massive blessing. Only 3 months in and we are already seeing good things in Zach. Members of the Cochlear Implant Team have said that Zach is making excellent progress beyond their expectations. This is a life-changing event, we are so grateful to the team at St George’s for everything they have done and for the continuing support they are giving to our little warrior. We are excited about where Zach is heading next on this journey. It’s definitely going to be an adventure for him.

Watch out world, here comes our little hero, armed with this speech processors!

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s