The parents of a toddler who could die every time she falls asleep due to a rare, incurable disorder have spoken of their agony.
Every night, Paula Teixeira’s, three, mother Silvana tirelessly tries to protect the youngster from passing away as she nods off.
Paula, from Zamora, Spain, has Ondine Syndrome, which affects between 1,000 and 1,200 people worldwide and causes the toddler to stop breathing the moment she falls asleep, putting her at risk of death.
Silvana said: ‘Since Paula came home, we can’t sleep as we used to before. One of your eyes is closed and the other is wide open thinking is everything okay.
‘She will always need a person to watch her sleep. Always, all her life.’
Although Paula is well enough to live at home and go to school, she requires a ventilator to feed her with oxygen every night while she sleeps.
Paula Teixeira could die every time she falls asleep due to the rare disorder Ondine Syndrome
Her mother Silvana (pictured) says her and Paula’s father cannot sleep with worry
Paula is well enough to live at home and go to school but requires frequent hospital visits
‘She will always need a person to watch her sleep’
Silvana said: ‘Since Paula came home, we can’t sleep as we used to before. One of your eyes is closed and the other is wide open thinking is everything okay.
‘She will always need a person to watch her sleep. Always, all her life.’
Her father, Roberto, added: ‘We are her parents. I can’t ask myself, why has this happened to me, that I have a girl like this?’
When sleeping, Paula requires a ventilator that feeds her with oxygen via a tube in her neck.
Yet, this does not give her mother much peace of mind.
Silvana said: ‘If everything is silent, I still come to see her, because there’s that fear. What if the machine fails?’
Paula requires a ventilator that feeds her with oxygen via a tube in her neck while she sleeps
Yet, her mother still worries when she hears silence, panicking the machine might have failed
Paula’s mother and father Roberto tried for four years to have a baby before IVF was successful
Stopped breathing within hours of being born
After four years of desperately trying for a baby, Silvana and Roberto conceived with IVF.
At 41 weeks, Paula was born by c-section
Roberto said: ‘I think that for every father this is the biggest thing that ever existed. To have a child is the most beautiful and most important thing in his life.’
Yet, just hours after she was born, Paula stopped breathing and was rushed to an emergency hospital 40 minutes away.
Silvana said: ‘I wanted to go with her. I wanted to be by her side, I wanted my baby because, why did they take her away? I was feeling like they snatched her from me.’
With Paula on life support, it took two months of genetic testing to finally diagnose her with Ondine Syndrome.
Paula was born at 41 weeks via c-section but stopped breathing within hours of being alive
She was rushed to an emergency hospital, where she was put on life support
After two months of testing, Paula was finally diagnosed with the rare condition
Paediatrician Dr Elvira Gonzalez Salas believes the condition causes many infant deaths
Condition responsible for many deaths
Paula attends school with the reassurance of a portable ventilator equipment.
Due to her parents and care team, Paula’s condition is well managed.
When she is old enough, a portable respirator mask will enable Paula to manage her own breathing at night.
Paediatrician Dr. Elvira Gonzalez Salas said: ‘The Ondine Syndrome is a very rare disease. The number of cases in the world are very low and so many times the diagnosis is delayed.
‘Probably many sudden deaths of little kids, newborn babies or very young breastfed babies could be related to Ondine Syndrome that was never diagnosed.’
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