Doctors have removed the “curse of Ondine” from a 13-year-old girl
Specialists at the University Clinical Hospital in Olsztyn implanted diaphragmatic nerve stimulators to stimulate breathing in 13-year-old Ania. The patient had been suffering from the so-called “airway obstruction” since birth. Congenital central hypoventilation syndrome also known as “Ondine’s curse”.
This is the first night in 13 years during whichothe virgin Ania was not breathing with the help of a ventilator. – Anna slept, but I did not sleep. This is indeed the first night since Ania was born spent without a ventilator. Now much will change. It will be a better and easier life. Respirator and all these procedures are very aggravating. The operation is a great hope for things to be different – said in an interview with TVP Info Ania’s mother – Mrs. Katarzyna.
Immediately after birth, little Anna had breathing problems. It took months before the girl was diagnosed with an extreme form of apnea środsenny. The curse of Ondine, because so roalso called this potentially fatal disease, is an extremely rare genetic defect thatora occurs in only a few hundred people around the world. Sufferers of this condition can experience respiratory arrest during sleep.
The operation was carried out under the direction of neurosurgeon Prof. Wojciech Maksymowicz. – A child can breathe normally as he remembers it, but when he falls asleep he stops breathing. If unresponsive, the patient could die,” explained in an interview with PAP prof. Maksymowicz.
The operation involved dissecting a nerveoIn the diaphragmatic, placing electrodes on them and implanting the hypodermicornie generatorow. The operation of the device resembles that of a pacemaker. Nerve stimulatoroin diaphragmatic stimulates breathing, does not allow the patient to die, giving him breath independently of the patient’s will. – Diaphragm muscles contract, inspiration occurs and ventilation occurs,” said a neurosurgeon.
Anna throughout her life had to constantly use a ventilator. – The nights were very hard. It was necessary to get up to control the equipment, sometimes several, sometimes a dozen times a night. About normal sleep there was no way – tells Mrs. Catherine. Now the girl’s life will completely change.
However, such an operation is not cheap. The cost of the device itself is more than 300 thousand zlotys. Now 13-year-old Ania will remain several days in the hospital under observation. Only then wroci home, but already without a ventilator.
"Ondine’s curse" took its name from the goddess Ondine from Norse mythology. She fell in love with a mere mortal, whoory was not faithful to her. For treason a curse was placed on him, ktora made it so that moc to breathe, had to remember this. The unfaithful lover died when he fell asleep.
The team operating the patient under the direction of prof. Maksymowicz was entered by neurosurgeons Monika Barczewska, Lukasz Grabarczyk and anesthesiologist Radoslaw Borysiuk.