Archive Monthly Archives: October 2019

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.

Life Changing Appointment

30 years ago in May 1989...our son Hughan was nine months old and still a very happy, content baby. He enjoyed sitting and playing with the toys he could reach with no signs of wanting to crawl yet. He was also babbling well and often sat chatting to himself.

As there were no Paediatrician's in Gaborone, I decided to take Hughan to Johannesburg for his baby check up to see one there. This involved going through the boarder post between Botswana and South Africa. The Paediatrician was based at Morningside Clinic near Johannesburg. The journey was going to take about 5 hours and I arranged to stay with friends overnight.

Hughan was always very good in the car and used to travelling in his baby car seat. I was quite confident driving on the roads in Johannesburg, where there was a big concrete highway that passes around the city with different off-ramps off to the surrounding areas. Our friends lived fairly close to the Clinic, which meant we didn't have to travel far for our appointment.

During Hughan’s appointment the following day, the Paediatrician put him on the bed for his examination. Hughan lay very quietly while he was being checked over thoroughly.

While the Paediatrician was talking to me, I was unaware of him scratching the surface of the bed near Hughan's head. When he had finished speaking to me, he said " I think Hughan might have a hearing problem". As you can imagine, this came as a great shock and had a huge impact on me; explaining he had been scratching the surface of the bed and Hughan had not turned towards the sound it was making.

This is the first time that I became aware that Hughan may have a hearing problem. Hughan had been lying on had a plastic sheet and when the Paediatrician repeated scratching the surface to show me, the sound was quite loud and noticeable. Hughan still didn't respond to the sound. 

The Paediatrician did an examination of Hughan’s ears, and he mentioned that he might have “glue ear”(this is a condition when the middle ear fills with liquid, that becomes thick and sticky, and can cause hearing loss). Because of this he recommended that Hughan went to see an Ear Nose and Throat Specialist.

There were also no Ear Nose and Throat Specialist in Gaborone, but luckily there was one next to the Paediatrician's rooms at Morningside Clinic, so I was able to go straight after our appointment to book an appointment to see that Specialist.Unfortunately the soonest available one was in three weeks time. 

There was no ways at this stage that we would ever have questioned whether Hughan was hearing us, as we thought he was responding to sounds and also at a similar stage to babies his age, although he was not as active.

This felt like a life changing moment.

We returned home to Gaborone and the following day I decided to do my own little hearing test. It was nearly Hughan's lunch time, so I walked into the lounge where he was sitting with his back to me and called out to him loudly, but with no response. I then decided to get a pot and wooden spoon in the kitchen and return behind him, where I banged the spoon as loud as I could on the pot, but still he didn't respond.

This was devastating. How were we ever going to find out how we could help him hear. 

At this time there were no home computers with internet to google and search for answers yet. There was no deaf community in Gaborone that we knew of to get support from, our family lived far away in Zimbabwe, South Africa and England and my dear Mum had died when I was 23 years old.  

I had an absolute feeling of determination, I was never going to give up.

The only choice we had at this stage was to wait 3 weeks for our appointment to see the Ear Nose and Throat Specialist at Morningside Clinic.

Hughan was fitted with grommets (a procedure done using anaesthetic, which involves surgically placing a small tube in the eardrum, enabling airflow into the middle ear, helping to dry up the fluid) which involved returning to Morningside Clinic.

We had several more appointments and many trips back to Johannesburg. A hearing test was booked at last for the 13th October, 5 agonising months after we first found out maybe Hughan couldn't hear us. At last we would find out if he could.