Girl from La Louvière (6) flirts with death every time she falls asleep | Inland

The disease’s popular name – actually called ‘congenital central hypoventilation syndrome’ (CCHS) – comes from mythology. It is a reference to the water spirit Ondine, who fell in love with a knight. But he was unfaithful to her, whereupon she cursed him. As punishment, he had to stay awake for the rest of his life to be able to breathe.

And that is exactly what Lyzéa has problems with. As soon as she falls asleep, she ‘forgets’ to breathe. When she’s hot, she doesn’t sweat. If she has an infection, her temperature will not rise. Or vice versa, the fever rises for no medical reason.

However, the pregnancy went smoothly. In April 2016 Mélanie Jaumot (37) gave birth to her third child. After Lyzea was breastfed for the first time, she fell asleep peacefully.

“But then I suddenly noticed that she was turning blue”, Mélanie tells the story to our colleagues from ‘Sudpresse’. “I called the midwife, although at first it seemed like a false alarm. Lyzéa was awake and her normal color had returned. However, when she fell back asleep a little later, she started to feel cold.”

At that time, a great alarm was raised in the hospital of La Louvière. Lyzéa was placed on a ventilator and after nineteen days a tracheotomy (a tube in the windpipe to which the device is connected) was performed. After the necessary examinations, the painful diagnosis came to light.

For Mélanie and her partner Arnaud Jaumont-Dupont, a hellish period of stress began. After all, a baby can doze off at any moment.

The parents also bought a second fan. “Just imagine that the first device experiences a technical failure. For Lyzéa, every second counts. The damage can be irreparable if she is without oxygen for too long.”

Lyzéa’s breathing and heart rate were continuously monitored. At the slightest deviation there was a shrill sound. “We have become accustomed to getting up three or four times during the night. When my daughter has a cold and the tube gets clogged with her mucus, it’s even worse. My husband works for transport company TEC. His alarm goes off at 3am, so from then on I’m on my own. I had no choice but to give up my job as an executive at Carrefour.”

A ride in the car was also impossible without a fan. “I can’t just stop on the highway if she were to fall asleep. The same song, by the way, when I’m busy in the kitchen and she’s watching TV,” says Mélanie.

A month and a half ago, the world opened up for Lyzéa. She is now old enough to warn her environment when she needs sleep, so the tube in her windpipe was surgically removed. The operation, which was performed under general anaesthetic, took an hour and a half.

It was replaced by a mask that is connected to the ventilator at night. Those who suffer from sleep apnea actually use the same system.

The mask sometimes dares to move and so the alarm continues to go off at night. “But now she can at least lead a normal life during the day,” says Mélanie. “Nothing distinguishes her from other children. Soon we will leave for a few days on vacation. For the first time, she will be able to dive completely into the water, without that annoying tube in her throat. We are very happy.”