Some hours after being born, the girl suddenly stopped breathing and went to the emergency room for 40 minutes. Since then, night is the nightmare of the whole family because when she closed her eyes and went to sleep, her respiratory system stopped functioning, causing the death at any time.
When she closed her eyes, her respiratory system stopped working
Silvana Teixeira (in Zamora, Spain) and Roberto Teixeira are infertile couples, they had to rely on IVF fertilization for four years to get pregnant. At 41st week, Silvana gave birth to Paula Teixeira by caesarean section.
The operation was successful. But, just hours after being born, Paula suddenly stopped breathing and had to be actively resuscitated within 40 minutes.
Since then, every night, when Paula Teixeira fell asleep, her parents were constantly anxious and awake all night because they were afraid their daughter could not wake up.
“We could not sleep as before. When an eye was closed, the other eye must be open to see that everything was going well. My daughter always needed someone to keep an eye on her as she slept. Always the same, the whole life of my daughter, “said Silvana.
Paula stopped breathing when she closed her eyes. So during her sleep, Paula needed a ventilator to supply oxygen through the tube in her neck. However, this could not make Silvana and Roberto assured. “If everything is silent, I still have to watch over her because there are full of fears. What happens if this machine is broken? “Silvana said.
At age 3, Paula could go to school, but she must have a handheld respirator. Thanks to her parents and caregivers, Paula’s condition was temporarily under control. When Paula got older, the breathing mask in machine would help Paula control her breathing in the evening.
The “Curse” could not be resolved
When Paula was gave birth, it took two months to perform genetic tests, doctors could confirm that Paula had Congenital Central Hypoventilation Syndrome (CCHS) – also known as Ondine’s curse – based on the folklore of France about Ondine sea goddess and Palemon mistress.
CCHS is a disorder in the central nervous system that affects the control of the ability of the respiratory system, so while sleeping, the patient’s body is not able to automatically breathe, leading to a cardiac arrest while simultaneously causing the brain to fall into a “dead” state.
“Ondine syndrome is a rare disease. A little people in the world suffer this disease and many times of diagnosis are delayed. Maybe the sudden deaths of infants or breastfeeding children can relate to Ondine syndrome, but it has never been diagnosed, “said Elvira Gonzalez Salas Pediatrician.
It is also a lifelong genetic disorder, Ondine syndrome affects around 1,000 to 1,200 people worldwide. The cause of this disease may be congenital, in some cases associated with a brain disease or after experiencing a major psychological trauma.
The strange disease “apnea” when sleeping is taken attention by a lot of scientific research in the world, but until now it has still been a mystery, there is no way to effectively treat its root. They only offer supportive measures and emergency therapy when the patient falls into a state of apnea such as using a ventilator during their sleep, doing surgery to open the trachea in case of excessive breathing.
And so, patients like Paula must continue to stick with their special bed, they will never have a life completely independent.