All Posts by SuePietersen

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.

Living Near a Desert

30 years ago…We were living in Gaborone, Botswana, which is on the edge of the Kalahari Desert. We were in the middle of the summer months and the weather was extremely hot with temperatures sometimes reaching over 40°C. Occasionally we would see stormy clouds in the sky and wonder if we would be lucky enough to have some rain that day.

The storms were quite frightening with extreme winds sometimes before a storm. I can remember leaving windows open at the house and because of the dryness there was so much dust being forced in the winds that this would cause a dust storm. Everything got covered in dust. You soon learnt to close your windows as the whole house needed dusting.

There were extreme flashes of lightning and loud cracks of thunder as the storms got closer. We always had a theory that for every four seconds you counted, between the flash of lightning and the loud cracks of thunder, was the equivalent to the storm being a mile away. So as the flashes of lightning came, you would count down and work out roughly how far away the storm was while you waited to hear the thunder. The storm could be there one min and gone the next and occasionally this caused flash floods.

There was always great excitement when the storms were near and we would look out the window and watched the rain pelting down outside. Sometimes it even hailed which could be quite frightening. Jamie used to get very excited when it rained and we would often put a bucket outside to collect rainwater. He had his gum boots and after the rains have passed he would enjoy paddling in the puddles of water.

After the storms had passed by green shoots of grass would appear in the countryside and all the Thorn trees would get their green foliage.

Hughan never seemed to be worried or frightened by the loud cracks of thunder and was generally a very happy baby. I would take him for his regular checkups to get weighed in Gaborone. He had had all of his baby injections locally and the clinic was really happy with his progress.

Like Winning the Lottery

Welcome to the new home page of Speech for Deaf Children. The website has just been updated from it’s first version that was created back in 2013. I’m hoping this website will give me a platform to share the valuable information that I have, with parents of deaf children around the world.

You may have seen our Facebook page and that is a tool that I use to communicate with parents around the world. At the time of writing this the Facebook page has just under 50,000 people on it.

Why not 'like' our page, if you've not already, by clicking the button below, and follow us to help other parents with deaf children around the world.

Hughan met his wife through the page and we’ve just got back from New Zealand as a family celebrating his wedding. He lives in New Zealand now with his wife Emma (who is also deaf).

Why the relaunch of the website?

My passion is to help other parents with deaf children through my experience, and by updating our original website, from 2013 to this one, we are hoping to improve your access to our information.

In 2008, when I turned 50, I wanted to write down what we had done to help Hughan, in case another member of our family has a deaf child in the future. I started reading Hughan’s Diaries from 1990 and soon realised there was a lot of information there, so started writing a book. In 2011, while tidying up, I came across all our records dating back to 1989, before Hughan was diagnosed profoundly deaf. Reading through these notes and entries made me remember how desperate I felt back then in Gaborone, Botswana. There were no home computers with internet, no google to find information, mobile phones hadn't been invented yet, so it was very difficult to find information about deafness and communicate with others. There were also no Specialist doctors or Paediatricians for baby check ups and no deaf community to get support and advice where we were living. How was Hughan ever going to learn to communicate? Would he be able to go to school one day? Would he ever be able to leave home? At the time I thought 'no' to all of these.

Hughan was 14 months old when he was diagnosed profoundly deaf  and received his first powerful hearing aids. We were told our only option was to teach him sign language, which isn't a universal language, and varies from place to place around the world; if we taught Hughan sign language in Southern Africa, he would be solely reliant on us, as his parents, for guidance if we ever went to live anywhere else. What made it even more challenging was that sign language also varies from town to town.  

In December 1989, searching for answers, we flew from Botswana to England to see Specialist in Harley Street, London. We wanted to find out if South Africa and England had a similar approach to deafness, which they did and signing was still our only option.

Due to a chance encounter with Dr Elaine Saunders, sitting on the train between London Paddington Station and Cornwall, we found out about the pioneering work being done on the cochlear implant in Australia. Elaine had just flown in from Australia and was on her way to visit family in Devon when she told us. 'This was just like winning the lottery.'

Back home in Botswana luckily one evening we watched a documentary on Helen Keller. We hadn’t ever heard of her before, but as we watched it I realised that if this lady, who was deaf and blind had achieved so much during her life, then so could our son. It also made me realise that teaching Hughan his communication skills was going to take lots of effort.

From there we found out about the Carel du Toit Centre in Cape Town, South Africa, where we chose to follow their program and incredibly they had already implanted their first child with the cochlear implant device from Australia. Hughan was the 10th child to receive the implant at the age of 3 and a half in 1992, this was before England started implanting children.

Choosing a program we believed in and putting 100% effort into what we were taught, has paid off. It's the little thing we did every day over a long period of time, that has added up to a huge amount. It's the consistent, persistent effort and a positive attitude we were encouraged to have, that helped. Also never giving up.

Just imagine, if it wasn’t for that chance encounter on that train, seeing that we’d seen all the specialists we could in Southern Africa and just moments before been told the same thing by the British specialists, Hughan would now be living in a silent world and communicating through sign language.

Elaine Saunders, the lady who we met on the train in 1989, is now an internationally recognised hearing scientist, audiologist and entrepreneur. We bumped into her just after our final hopes of our son having some sort of a “normal” life had been severed by the last doctors we’d planned on seeing in the UK; as we were heading home to my Dad’s before heading back to Botswana in defeat!

I don’t think there’s a mathematician in the world who could calculate the odds of that encounter, but it was that ‘fork in the road’ moment that set us off on our journey.

I’m writing a book about our amazing story. Of how we moved from Botswana to Cape town to Zimbabwe to England and how Hughan went from learning how to hear at the age of nearly 4 and therefore only learning how to speak at the age of nearly 4 to how he now lives a happy and independent life, literally on the other side of the planet over in New Zealand.

I’d really appreciate your feedback on my book. It’s not finished yet but will be in the next year or so. I have got a small sample that I’ve written at this point and I am looking for feedback so if you would like to help me with my book before its published then put your name and email in the form below and I’ll be in touch.


GET YOUR HANDS ON A COPY OF THE FIRST CHAPTER OF MY BOOK!


FOLLOW OUR STORY FROM THE BEGINNING.

Enter your details into the form below and I'll send it over.

The Roads in Gaborone

30 years ago in 1989…Driving on the roads in Gaborone was a completely different experience to what we were used to in Zimbabwe.

All of the roads were linked with round abouts ( we used to call these “circles”). We soon realised that over the weekends drunken drivers used to end up in the middle of them. Some of the roads were still dirt and very dusty. Often you would be driving along and have to give way to goats, chickens, cattle, donkeys and kids!

Driving in to most of the Hotels, in the city, you would have to go over a cattle grid. These were there to stop cattle and donkeys roaming onto the hotel grounds and eating the lush grass that had been watered.

The first set of traffic lights (robots) had just been put in. These were also proving to be very challenging with the drivers.

Because of the layout of all of the roads it was quite easy to feel a bit lost, but if you kept going you usually ended up recognising where you were.

Jamie had started a play group and was making lots of new friends. I also got to meet all the Mums and we were all having a great time.

Hughan was growing quickly. He was always very content and enjoying life. We were still unaware he couldn’t hear us.

An excruciating cry

30 years ago...our youngest son Hughan was usually a happy, content, babbling baby and seemed to be responding to us when we spoke. We were totally unaware he might not be hearing us at this stage.

One afternoon I had been at home with both of the boys. Hughan became quite restless and seemed to have flushed cheeks. I thought he was probably teething so I gave him some Calpol (a liquid form of paracetamol), which usually helped.

Within a short time he became more and more restless and all of a sudden had an excruciating cry, almost frantic. It was as if something was pinching him. I could not find anything wrong with him and felt totally helpless and finding it hard to calm him in any way.

I phoned our doctors surgery in Gaborone and they had already closed for the day. I managed to get through to my doctor at her home and she was happy for me to take Hughan to see her.

Hughan had become exhausted from crying and had started to calm down. The Doctor gave him a complete check over. He had a high temperature, but other than that she could not find anything specifically wrong with him. I was to go back home and see the doctor the following day if he continued to cry and be restless.

When we got back home Hughan fell asleep from exhaustion and slept soundly over night. The following day he seemed much happier and there was no need for me to go back and see the doctor.

We never found out what caused Hughan to have such an excruciating cry that day, or whether this might have contributed towards his hearing loss that was eventually diagnosed months later.

Life in Gaborone

30 years ago…In March 1989, we had already been living in Gaborone in Botswana 7 months, and still totally unaware Hughan couldn’t hear us. He was a happy, content baby and seldom cried.

Life in Gaborone was very different from living in Harare, Zimbabwe. The weather was much hotter, so all the houses and shops were air-conditioned.

Our home in Harare had a walled garden, on nearly and acre of ground, and had its own swimming pool. In Gaborone we lived in a place called ‘Bemcoville’, which was an expatriate compound where the employers of Bemco, Willem’s new company, lived.

Bemcoville was a complex of small semi-detached homes, situated on a large piece of ground with a high wall around it. There was a security guard at the entrance, where you had to give your identity and reason for entering the complex.

All the residence were young families and we each had our own small garden. Within the complex there was a playground,  swimming pool and tennis court, so there was always someone about and a great way of meeting people and make friends.

We had all settled in very quickly and feeling quite at home.

To work in Gaborone you had to have a work permit, so most of the Mums stayed at home with the children. This was great, as we used to all meet up for tea parties, playgroups and lots more excuses for get-togethers.

Willem had just received a promotion, so we would soon be moving into a house closer to Gaborone city centre.

30 Years Ago

30 years ago…In March 1989 we were totally unaware that our youngest son Hughan was profoundly deaf and unable to hear us. He was a happy content baby.

We have been on an incredible journey with him, teaching him his lip-reading and communication skills, where he has overcome his challenges and can even hold a conversation on a phone.

Luckily we kept a ‘Diary’ from February 1990 which I will be sharing with you. 

At the time we were living in Gaborone in Botswana and it was exciting time for us, as we had recently moved from Zimbabwe where our two sons, Jamie and Hughan, were born. Hughan was already 7 months old and growing fast. 

My husband, Willem, had just started an ex-patriot contract at Kalahari Ford and we were enjoying our new life in Gabs.This was quite a critical move for us at the time, as it meant we were in a better financial position, so I didn’t have to work and could spend quality time at home with our children.

Gaborone is situated on the edge of the Kalahari desert. We had arrived at the beginning of the hot summer with scorching heat. The city had just got its first set of traffic lights and often you would be giving way to donkeys, chickens, goats, cattle and children.

In Gaborone there were no Ear, Nose and Throat Specialists (ENT) or Paediatricians for the children’s check ups, so we had to travel through to Johannesburg in South Africa (four hours away) for these appointments. Hearing tests were also not available yet for children at birth.

At the time there was no technology to find information, there were no home computers with internet and Google, and mobile phones hadn’t been invented yet.

Relaunch of Hughan’s Diary – 30 Years On

Hi everyone,

We’ve removed all of Hughan’s diary entries that we ran in 2013, written in the early nineties, because we’re going to be running them again in real time starting in Jan 2020; this time 30 years on from the event.

Follow along this year as we discover Hughan’s deafness 30 years ago and are told he’d never learn to hear or speak and would have to sign. Hughan is profoundly deaf, but luckily after a chance encounter on a train heading from London to Cornwall in 1989 we met Elaine Saunders (who is an internationally recognised hearing scientist and audiologist) who told us about the pioneering work being done on the cochlear implant. We found and went for the Carel Du Toit Center in Cape Town where Hughan followed the program and in 1992 was the 10th child (34th person) to receive his cochlear implant at the age of 3 and a half.

February 1990 is when the real work began and our ‘Diary’ started. This is when we were taught the top tips and embraced a new way to communicate with Hughan. It was only after reading through my diary notes that I realised what it was that gave us so much success with Hughan; who can now hold a conversation on a phone and has chosen to live the other side of the world in New Zealand with his wife Emma, who is also profoundly deaf and met on our Facebook page.

I’ve decided to make all of the exercises and principles we used into a course with the help of our other son Jamie who has made this website and I’m going to be letting people sign up to the site (which will be free for everyone to join) to gain access to the training material and eventually the forum; giving us a platform to share, learn and grow with each other.

In the mean time I’m also writing a book which I will be publishing in the near future and members of my academy will get access to an early copy of that so it’s well worth joining us. If you follow us on facebook and like our posts then you’re going to love what we’re going to be doing for parents with deaf children and you’ll want to make sure you’re registered as soon as possible.

The website, forum, academy etc is still in development and is aimed to be completed by June 2019.

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