Liam, 9 years old, struck by meningitis on his birthday: his mother testifies

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Liam, surrounded by his friends and his family, on this evening of July 22, was to blow out his 9 candles. The party was not as expected, because an unexpected bacteria came to invite itself that evening, dragging this little guy, fortunately well surrounded by more than combative parents, into a long and grueling health journey. Rather than surfing the waters of the bay like his friends, he would have to navigate the wards of various hospitals. Her mother, Aurélie Guillou, who, with her husband Pierre, runs the restaurant La Bavardise in La Baule (Loire-Atlantique), was kind enough to entrust her story to The Echo of the Peninsulaso that his experience can help other parents.

What symptoms did your son have?

Two or three days ago, a mild headache had started and persisted despite the administration of paracetamol. On the evening of July 22, the temperature rose to 38.8, which worried us. He stayed in bed all evening just blowing out his candles and opening his presents. We kept him up all night and the vomiting attacks kept coming.

In the early morning, he began to rave and fantasize, and he complained that his neck was getting stiffer and stiffer. We called the 15th immediately.

How did the phone call with number 15 go?

My call was immediately answered by a doctor who inquired about the symptoms and asked me numerous and specific questions. He sent us ambulance immediately because Liam had to be hospitalized in the next half hour to undergo a lumbar puncture, following suspected meningitis. There, I understood that it was very serious.

Was the treatment at the Saint-Nazaire hospital quick?

Arriving at the pediatric emergency room, we were taken care of by an efficient intern who suspected bacterial rather than viral meningitis, confirmed by the lumbar puncture.

Bacterial meningitis is much more serious than viral meningitis, it can lead to death or neurological sequelae. The intern therefore decided to have Liam transported to Nantes University Hospital, which has a pediatric intensive care unit. His state of health deteriorated hour by hour. He no longer remembered his dad's first name, and did the opposite of what he was asked…

How long did he stay at the hospital and what was done to him?

In Nantes, cared for by the pediatric ENT department, he spent a night in the ICU under antibiotics and began to come to his senses.

The result of the lumbar puncture led to the adaptation of treatment for pneumococcal meningitis. He remained lying down for a week with multiple daily blood tests to see the impact of the treatment.

During this painful week for him, he also had a CT scan and a global MRI of the brain. These two examinations showed nothing special.

So Liam was repatriated to the Saint-Nazaire hospital center to continue his treatment?

Yes, and during this week of hospitalization, we realized that he had lost the hearing in his right ear, the tests confirmed this observation which was announced as irreversible. No device can fully or partially regain hearing; just an implant is possible, but for that, you have to lose hearing in both ears, the doctor said. This was not the case for him, so additional tests had to be carried out. The Saint-Nazaire hospital did not have the appropriate equipment, so we had to go back to the Nantes University Hospital. Two days later, we were back in the ENT department.

What are you learning?

In summary, I have confirmation of the impossibility of a single implant, the second ear must be reached to be able to fit both at the same time. Our son will therefore have to have regular hearing tests, because although the operation seems possible, it can only be done within a very narrow window. If you miss it, he becomes permanently deaf. Furthermore, the ENT adds that the impossibility of a single implant is a directive from the High Health Authority which fears a surgical risk and relapse of meningitis as well as a cost problem.

These explanations did not suit me, particularly the word cost which really appealed to me.

I left his office in tears.

With your husband, did you then turn to the American Hospital in Paris?

If there is a question of cost, you might as well contact the American Hospital, even if it means taking out a loan. My husband and I were determined to fight to save the hearing in his ear. No question of blaming ourselves for it all our lives. Contact was made with a doctor from the American Hospital who, after verbal and written explanations, made an appointment for us the next day, telling us that he did not have the necessary equipment to operate on a child, but could get him into Necker hospital.

Arriving on site, new tests were carried out. Given the results, the American Hospital wrote us a letter of recommendation for Necker, where we left immediately.

The journey continues, here you are both at the Necker hospital…

We arrive in Necker at a late hour, the offices are closed. By knocking on all the doors, one of them ends up opening. After reading the letter of recommendation, the secretary immediately gave us an appointment with an ENT pediatrician on call. By consulting the file, the doctor decides to carry out a whole battery of tests in a soundproof box, a balance test and a very in-depth tinnitus test.

Another pediatric ENT doctor arrives as reinforcement to compare their opinions.

Their conclusions are not as clear-cut as those of the Nantes University Hospital…

No actually. The carrying out of more in-depth hearing tests as well as a more targeted MRI and CT scan of the ears, carried out the following morning, made it possible to reach the conclusion that an operation was indeed possible, and was well within the protocol of the High health authority. The two doctors explained to me that to receive an implant, three things were necessary: ​​sudden deafness, which must occur after an infectious disease, and the presence of tinnitus. Liam presents all three, so he fits well into that framework.

The search for tinnitus as well as the targeted MRI and CT scan had not been carried out in Nantes. Yet another check is planned for November 21 and 22, in order to set the date of the intervention.

And today, how is Liam?

He's doing much better. He was very disturbed until he received answers and solutions from the Necker hospital. He returned to school normally, he returned to his theater, singing and dancing classes, his passions.

What lessons have you learned from “your health journey”?

As the saying goes, to err is human, even for highly qualified people. That doesn't mean that you always have to make up your own mind and fight, always fight in life. This is the proof.

Comments collected by Pascal FRIOUX, local correspondent

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