Julien’s Hearing Problems

The latest of Siobhán Stuart’s series of articles for Frontline Ireland Magazine outlines the challenges Julien faced with his hearing issues, and the road to resolution...

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Julien and family

As I mentioned in my first article, Julien’s health problems took precedent over his handicap. His biggest problem after his digestive problems was his hearing problem. Julien suffered from fluctuating deafness. He had glue ear for many years, so he was fitted with an ear aerator each year which very often didn’t remain long enough in his ears. So it was decided to enlarge his external auditory canal to no avail. I was shocked when the ENT (Ear, Nose and Throat) doctor didn’t suggest doing a hearing test to check Julien’s hearing capacity. I was told that the paediatrician or the speech therapist had to request it.

After visiting many ENT doctors in 2 departments, le Gard and l’Herault in the south of France and getting nowhere, we finally decided when Julien was 16 to go to a private clinic in Beziers. We had wasted a lot of time and energy and worst of all Julien had huge communication and speech problems and constant ear infections and was subjected to perpetual visits to doctors who

didn’t offer any solution.

Sinus and ear infections meant he lost his appetite; he had difficulties breathing so sleep patterns were affected; relationships were difficult – not being able to express yourself or being understood

can be horrendous for most people, but if you are also intellectually challenged it is a double handicap.

Julien seemed autistic at times, being cut off from others and withdrawing into himself. Fortunately

he was stimulated by his brother and sister and his family environment, and has a naturally sociable temperament. He underwent a thermal cure for respiratory problems for 3 years when he was young to alleviate some of the symptoms and to avoid taking antibiotics and cortisone during the winter months.

Béziers offered a solution, a bone-anchored hearing aid (B.A.H.A.). This meant he had to undergo two more operations. The doctor and the anaesthetist requested charges exceeding the statutory fee – as it was a private clinic they were entitled to do so. BAHAHowever, Julien’s operation was to be done at two separate times so that the screw would be welded before fitting the abutment. I mentioned this fact to the doctor asking if I would have to pay an excess fee the second time. He asked me if I had money problems, so I reminded him that it was the same operation split in two sessions to which he replied, “yes, of course” and to remind him when I returned the next time. I

was extremely shocked that he should take advantage of vulnerable people in such a way without any scruples whatsoever.

The operation was successful, although a bit traumatising as the doctor opened up the back of Julien’s ear and found a cholesteatoma, and so he was stitched up all along the back of his ear which looked very dramatic.

Meanwhile I had made contact with an audioprosthesist in Ales, our home town and he had proceeded to order a hearing aid for which he had already received 18,000 francs, at the time, from the French National Health System. The hearing aid didn’t correspond to Julien’s needs and the audioprosthesist said we would need to pay more if we wanted him to change it. So I immediately contacted the supplier of the B.A.H.A. which was a Swedish company – it had only been on the market for the previous 5 years, so relatively new. After a lot of difficulties and threatening to denounce the audioprosthesist for his dishonest practices in the local press he finally succumbed

and handed over the new hearing aid which didn’t work and had to be sent to Sweden for a revision.

The nurse came to the house to take out the stitches, she spoke about Julien being Mongolian to which my daughter replied “no, he’s not Mongolian, he’s French”. She must have been 11 at the time and I felt very proud of her for speaking up for her brother and putting the facts straight.

A month later Julien had the second phase of his operation. We were told to visit an audioprosthesist on leaving the clinic to have the B.A.H.A tested and fitted. He turned out to be the doctor’s brother-in-law. He didn’t explain anything and we had to stop en route to our house so Julien could take off the hearing-aid as the sounds were unbearable.

He had to learn to filter the new sounds. I followed him around for a week, raising and lowering the

sound on his hearing-aid and wondered if we had done the right thing. I took him with his brother and sister to a ski resort that year and he quickly learned to adjust the sound himself while eating in the noisy canteen.

specsThe B.A.H.A. has given him a whole new autonomous life which he would never have had without it. Having spoken to other audioprosthesists I realize he could have had a pair of glasses with a battery in the frame, spectacle hearing-aid or a B.A.H.A. headband which costs very little and can be used by children until they have finished growing.

headbandIt upset me a lot to learn that there were other possible solutions and that Julien didn’t avail of them despite our efforts to do whatever we could to improve his speech and his hearing. And to add insult to injury we had the misfortunate encounter with an ENT doctor in Nimes who was recommended by the private clinic, who I went to see after Julien’s bone-anchored hearing aid operation (B.A.H.A.).

The doctor carried out the check-up in a very unfriendly manner and proceeded to make a comment about Julien’s hair which was cut short due to the operation. He commented: “Does he usually wear his hair like this?”. A bit surprised, I explained politely. Then he continued to question me about why Julien was handicapped. Totally taken aback, I replied: “You should know, you’re a doctor, it’s a genetic accident!” He answered: “There’s no such thing as a genetic accident, everything can be explained”. To this, I asked: “What difference would it make? Julien would still be Down Syndrome?”. He answered: “He’d understand why he’s handicapped and it would help him to grow and develop “.

I asked him if he was a psychologist or an E.N.T. doctor? He replied that he would carry out the session as an E.N.T. doctor and we would be reimbursed by the Social Security (The National Health).

I asked him, out of curiosity, what he called this method and how it worked. He said it was called: “Biopsychogeneology” (Recall Healing), and that it was done by looking into the mother’s past, not the father’s, to discover why she had a handicapped son.

I was extremely shocked by what I had heard and I decided to write to the Social Security (N.H.S.) and the National Medical Council denouncing such fraudulent practices. As a result, he was reprimanded by the N.M.C. which considered him not qualified to carry out such examinations, being neither a geneticist nor a psychologist. He was also warned about being paid by the Social Security for acts that were not strictly speaking, E.N.T. examinations.

Yet another painful incident happened when Julien had a kind of seizure while we were in the Cevennes on May 1st for a long weekend. Julien had (as usual) an ear infection so we had the usual drops to put into his ears. He started getting headaches and feeling a little dizzy. Not really knowing what was wrong, I refrained from administering the drops for one day. The following day, Julien slept much longer than usual, and I put the offending drops into his ears as soon as he woke up. He went into the garden to join his brother and sister and immediately he was struck by a dizzy spell which brought him to the ground. His brother and sister shouted that Julien had fallen. We ran to him – his whole body contracted, and his eyes convulsed; he looked distorted. I ran to telephone, but didn’t know which number to dial.

I rang the local police station to get the local doctor’s number. We felt panic-stricken and frightened. I could see him in a wheelchair for the rest of his life. I rang the local chemist for the doctor’s number who was on duty that May weekend. We managed to carry Julien down from the top terrace to lie on the sofa. He started vomiting and blood was coming from his mouth. Was he having an internal haemorrhage, or did he just bite his tongue? The doctor sat him on a chair to examine his ears and throat. But Julien’s dizziness was so overpowering that all he could do was throw himself on the floor and vomit again.

The doctor, feeling powerless, asked if Julien always behaved like that. He told us to take him to the hospital in Ales, as there was nothing he could do. We phoned our paediatrician in Ales who was on duty that weekend at the hospital, he said to give Julien some Motilium during the trip to calm his fits of vomiting. The journey went smoothly while Julien was lying down but as soon as he got up a new fit came on. He was better in a horizontal position.

He was immediately put on a drip at the hospital to stop the dizzy spells but the medicine caused him to have hot flushes. Later that evening they did a scan checking for any brain trauma. He spent a restless night on the drip and was allowed to leave the next day. He returned a few days later for an E.E.G. to detect epilepsy which fortunately wasn’t the case. We realised that his fit had been triggered off by the temperature of the ear drops which had never crossed our minds in the past.

A few years ago, Julien underwent another operation for a tympanoplasty, to close a hole in his eardrum. Since then his ear condition is stable, with regular visits to an E.N.T. doctor every 6 months. The B.A.H.A. has provided him with the possibility to live autonomously and to enjoy life to the full. He has learned to read and write and his speech, although not perfect, is comprehensible. He is now willing to repeat and to make himself understood. He has been doing a respiratory cure again for the past 3 years and will continue this year. His health has improved generally thanks to the fact that he has a permanent job, his own apartment and living with his girlfriend. All this has contributed to providing him with a stable life, which in turn has impacted on his health globally.

Siobhán Stuart is Julien’s mom – she’s Irish, and moved to the south of France 36 years ago and married a French man. They have 3 children, Julien being the eldest. The three children have grown up well, all three have careers and are living with their partners and Siobhán retired recently from her job as an English teacher.

1 COMMENT

  1. Julien’s Hearing Problems
    The latest of Siobhán Stuart’s series of articles for Frontline Ireland Magazine outlines the challenges Julien faced with his hearing issues, and the road to resolution…

    I am French and I ask you to excuse my language. I know Julien who is a friend of my daughter Cécile, herself Down syndrome. I also know a little history of Julien, even if I did not know the episode of the crisis on May 1st. Julien is a very sociable person. He is also very patient and willing to explain himself in different ways when he is not understood.
    He shows so much goodwill and it is difficult to see him the prey of incompetent doctors who do not question themselves, but also who benefit from the distress of their patient and their family to act without measuring the consequences of their acts. I can testify that I also knew this kind of doctor who considers trisomy as a family defect or something so weird and unmanageable that we can afford all the “fantasies”. Are these doctors so fragile that the syndrome rubs off on them?
    I wanted to answer this article to pay tribute to Julien and his family. They are fighters and enthusiasts. So, they got there. However, their course could have been more comfortable.

    Anne Le Graciet

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