30 years ago today our son was diagnosed profoundly deaf
IMAGINE A WORLD OF SILENCE...then imagine this was your child's world!
Today we celebrate our journey of 30 years, since we were told our son was profoundly deaf.
On the 13th October 1989, 30 years ago today, we were told your son couldn't hear, in fact he couldn't even hear a jumbo jet take off at close range!
At the time we were living in Gaborone, Botswana, where there were no Paediatricians, Ear Nose and Throat Specialists or deaf community to get help and support from, so we had to travel 5 hours to appointment in Johannesburg, South Africa.
There were also no home computers yet with internet or google to find answers or emails to communicate easily. Mobile phones hadn’t been invented yet, so there was no easy access to speak to people or get our questions answered. We had a feeling of absolute desperation! How were we going to help him?
If I can take you back 5 months, to when Hughan was 9 months old, to his initial appointment with the Paediatrician in Johannesburg, when he had told us Hughan might have a problem with his hearing and recommended us to take him to see an Ear Nose and Throat Specialist, which we did. We had been going back and forth from Gaborone to Johannesburg for many appointments, including Hughan having grommets fitted, to help drain the “glue ear” discharge he sometimes suffered with from ear infections and reduce the pressures in his eardrums.
Every day was challenging. We wanted our questions answers and still unsure how we were going to help Hughan with his hearing and communication skills, or if he wasn't actually hearing us. We had spent a lot of time each day checking to see if Hughan was responding to noises we were making. I had even done my own little hearing test, by banged a pot with a wooden spoon as loud as I could, behind his back without him being able to see me, and him not responding at all.
He still seemed so young and we were unsure if he was giving a true response to us; as he was a happy and contented baby, always babbling away.
At last, five months later, a hearing test was booked for the 13th October. Hughan was 14 months old now and we were hopefully going to get a result from him having a hearing test and our questions answered.
That day we had the added pressure of Hughan’s brother, Jamie, having his tonsils out. My husband, Willem, had also travelled with us to Johannesburg and I was planning to stay with Hughan and Willem with Jamie.
Willem went with Jamie and he was admitted into the hospital. It was only once the specialist saw him, as he was about to go into theatre, that he realised that Jamie had tonsillitis and couldn't have his tonsils out that day.
While this was all going on with Jamie, at the same time I had taken Hughan for his hearing test appointment. Going into the room for his test, it soon became clear that the wrong test had been set up to test him. It was set for an adult and not one for a baby. There was seating with speakers set for an adult to respond to sounds they could hear, which was not the appropriate test for Hughan.
When the nurses realised what had happened, they said that he couldn't have his hearing test that day.
I had burst into tears with desperation, all we wanted were some answers. The nurses were very kind and realised how important it was for Hughan to have his test that day and decided to take their lunchtime off to do a brainstem test on Hughan, not even knowing what this meant!
(This is a picture of a baby having a brainstem test...)
I never realised such equipment existed that could monitor what a baby was hearing. Hughan was sedated and lay sleeping as he had electrode pads put on his head and the test started.
While the test was being done, I was very tearful and could hear the volume of the equipment was very loud and knew that the outcome was going to show Hughan couldn’t hear us. The nurse kept saying to me “How did you know that Hughan had a hearing problem?”
The results of the test were that Hughan had a profound hearing loss of 110 dB, not even a corner showing on the graph.
This is a copy of Hughan's hearing test, taken on the 13th October 1989, showing no response in both ears.
By this stage, Willem had now joined me with Jamie and was comforting me. Hughan had woken from being sedated and we went in to speak to the Specialist who explained the results, telling us Hughan wouldn't even hear a jumbo jet taking off at close range. He also said we were welcome to go and get a second opinion. Willem and I thought this was a good idea, so an appointment was booked for the next day with another Specialist.
At last we were getting answers. What a roller-coaster of emotions it had been! The day had been exhausting.
At the second appointment the following day, the same results were given. This Specialist told us Hughan wouldn't even benefit from wearing hearing aids and he should start a signing program straight away. His hearing loss was so profound, he would never be able to hear speech sounds or learn to speak.
Luckily we went back to see our original Specialist who told us this was not the case. Hughan should be fitted with the most powerful hearing aids available. He was also going to rely on us, as his parents, to teach him his communication and lip-reading skills. Hughan could achieve so much during his life, but would be totally relying on us to help him.
As you can imagine, this was the best advice we could ever get and have kept this advice in our minds every day since then. It's the choices we've made over the years that have impacted on Hughan's life. It's the consistent, persistent effort over a long period of time, that has added up to a huge amount and been life changing for him. Always having a positive attitude and never giving up!
We would like to thank Dr Davidge Pitts, who was our Specialist at Morningside Clinic in Johannesburg for his advice. This advice has impacted hugely on our attitude to help Hughan and the achievements he's made with his hearing and speech since then.
We are truly thankful for our journey since then. Hughan is now in his 30's and can even hold a conversation on the phone, chosen to leave home in England, get married and live in New Zealand with his beautiful wife Emma, who is also profoundly deaf.