Paula Teixeira, a 3-year-old Spanish citizen, was born with the rare Ondine syndrome. Every time a girl is poisoned to sleep in the evening, her parents are afraid that she will not wake up in the morning. Due to Undine's syndrome, the girl may stop breathing during her sleep.
Paula has a special device on her neck that will supply oxygen to her lungs if she detects that oxygen starvation has begun. Paula tries to live like all children, during the day she can go for walks and to elementary school like ordinary children, but at night she needs constant supervision.
Undine's syndrome is very rare, with only about 1000-1200 people with this syndrome registered worldwide.
“Since we brought Paula home from the hospital, we have learned to sleep with half an eye,” says the girl’s mother, Sylvanas, “at any suspicious moment, we will immediately wake up and run to check if everything is okay with her.”
This syndrome cannot be cured, and for Paula, even when she grows up, she will always need someone who will be with her and will constantly look after her.
Paula was a very desirable child, her parents Silvana and Roberto for four years could not conceive a child and agreed to the IVF procedure. The girl was born 41 weeks later by cesarean section.
At first everything was fine with her, but after a few hours she began to stop breathing. She was rushed to the hospital and the infant spent two months in a life-support machine before he was diagnosed with Undine Syndrome.
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Ondine's Syndrome or Ondine's Curse Syndrome, also known as Congenital Central Hypoventilation Syndrome. This is what they call sudden respiratory arrest during sleep and death. Doctors have another, less romantic designation for this disease - sleep apnea syndrome.
Cessation of breathing during sleep can occur in any person, but if it lasts less than 10 seconds and such cases are rare, then this is not a disease. Pathological apnea is considered when breathing stops constantly, several times per hour, and stops last more than 10 seconds. This condition is already life threatening.
This disease got its common name from an old Germanic tale. Mermaid Undine, daughter of the sea king, fell in love with the earthly youth Lawrence, married him and gave birth to a child, losing her immortality. At the altar, Lawrence swore eternal fidelity to his bride, saying: "As long as I breathe, waking up, I will remain faithful to you." But he did not keep his oath. One day Ondine found Lawrence with a young girl, then she cursed him. The husband swore by his breath, so let him breathe only when he is awake. And when he falls asleep, his breathing will be interrupted and the traitor will die.
The cessation of breathing due to Undine's syndrome is determined by the disappearance of breathing automatism during sleep, that is, it is associated with disorders in the central nervous system. Scientists have found that a defective gene is to blame for everything, that is, the disease is congenital. But the disease is not inherited, but is caused by a gene mutation during the intrauterine development of the child. What exactly is the root cause of the mutation is still unknown.
The disease usually manifests itself in infancy, in the first year of life, but can occur later. Previously, such children died, as no one knew the cause of the disease. Doctors in such cases diagnosed sudden infant death syndrome.
Today, the causes of this pathology are known, but there is no way to get rid of it. The only thing doctors can do is to help a sick child breathe.
A newly born baby is immediately connected to a breathing apparatus, and he is constantly on artificial ventilation. With age, when the baby reaches two years old, the device is used only during sleep. To do this, a tube is installed in the child's trachea - a tracheostomy, through which the apparatus is connected. At an older age, masks are used that are worn all night. They provide for the control of the volume and pressure of the incoming air.