Paula, no te duermas sin avisar

sindrom3

enero 08, 2021

Morales del Vino 
EL PAÍS

Una niña de dos años sufre el síndrome de Ondine, una enfermedad rara que provoca la muerte cuando los afectados se duermen porque dejan de respirar.

Azul cian. A Silvana Teixeira, de 39 años, no se le olvida la tonalidad de su hija al poco de nacer: «El parto fue bien. Me dieron a la niña y de repente empezó a cambiar de color. Me asusté mucho». Al principio, a ella y a su marido les dijeron que era algo normal. A la tercera apnea la pusieron en observación. «Ahí descubrieron que Paula estaba bien hasta el momento en el que se quedaba dormida, cuando empezaba a bajarle el oxígeno en la sangre. Parecía que al entrar en fase de sueño, su cuerpo se apagaba», relata la madre. Y justamente eso era lo que le pasaba: Paula sufre síndrome de Ondine. Paula no puede dormirse sin avisar porque si lo hace no despertará jamás. Paula solo tiene dos años.

«Cosquillas, cosquillas, a las nubes les hago cosquillas…», recibe Paula canturreando y bailando en el salón de su casa de Morales del Vino, un pueblito cerca de Zamora. Al poco, empieza a garabatear en una libreta para poco después coger el muñeco de un bebé y jugar a dormirle. Para ello hace un gesto atípico: le acerca un tubo al cuello y le conecta a una máquina imaginaria. La misma operación que realizan con ella sus padres cada vez que Paula quiere dormir.

Tras dos meses sin salir del hospital a Paula le dieron un diagnóstico: «Uno de los doctores del Hospital de Salamanca se acordó de un caso semejante y le hicieron las pruebas genéticas. Fueron meses muy duros y, a pesar de la gravedad de la enfermedad, un alivio saber lo que tenía nuestra hija», resume el padre de la niña, Roberto Torres, de 39 años. Según la mitología griega, Ondina era una ninfa de agua que tenía un amante mortal. Este le juró amor eterno y aseguró que cada vez que respirara, su amor por ella sería más fuerte. El hombre mintió; fue infiel. La ninfa, indignada, conjuró una maldición: si su examante quedaba dormido, se olvidaría de respirar y moriría.

Justamente eso es lo que le pasa a Paula y a las personas que sufren el síndrome de hipoventilación central congénita, una enfermedad descubierta en los años setenta. «El origen es una mutación espontánea», explica la madre, «concretamente en el cromosoma cuatro, responsable del sueño». Cuando Paula se duerme, su respiración se desconecta, por eso hay que enchufarla a un respirador que introduzca aire en sus pulmones a través de un tubo.

«Tengo miedo de acostumbrarme al sonido y un día no despertarme»

SILVANA TEIXEIRA

«Estos niños antes crecían en el hospital, ahora pueden estar en casa gracias a las máquinas portátiles. Además, tenemos línea directa con la UCI», resume la madre. Viven una hospitalización domiciliaria. «Tuvimos que tener mucha paciencia, ser valientes, vencer miedos y aprender muchas cosas. Por nuestra hija lo hicimos», añade Teixeira que pidió una excedencia en su trabajo en el comedor de un colegio para poder atender a la pequeña. También comenzó a conocer otros casos:

«Las asociaciones [Asociación Ondine y la Asociación de Enfermedades Raras de Castilla y León] nos han ayudado mucho», reconoce Teixeira. Su pareja sigue trabajando. Además, Paula tiene reconocido un 78% de discapacidad y reciben ayuda por la dependencia (300 euros). El hospital les suministra todo lo que necesitan para atenderla y, hasta que cumpla tres años, la niña va a la logopeda. Debido al orificio que tiene en su garganta, a estos pequeños les cuesta más aprender a hablar. Al conectar directo con la tráquea y los pulmones, también es un foco potencial de infecciones.

«A todo se adapta uno», dice Silvana. Paula no para de sacar juguetes hasta que su madre la sienta a la mesa para que coma. Macarrones, su plato favorito. Lo hace sola, cogiendo con grácil cuidado una cucharita. Acaba y llega la hora de la siesta. «Tenemos controlados sus ritmos», explica Silvana. En cuanto percibe que Paula va a caer rendida por el sueño, prepara todo: le conecta el pulsioxímetro, que mide la saturación de oxígeno en sangre; enciende el respirador, que introducirá el aire en los pulmones de la niña y le prepara la cánula para introducirla en el cuello de Paula. «A veces, por la noche se mueve y en sueños se quita el tubo. En ese momento suena un pitido que nos avisa», resume Silvana. «Tengo miedo de acostumbrarme al sonido y un día no despertarme», reconoce. Por eso siempre duerme con un ojo abierto. Unas leves ojeras delatan su duermevela.

A pesar de las dificultades, la familia de Paula tiene un sueño: viajar a Brasil, de donde es originaria su madre. «El año que viene igual podemos hacerlo», dice el padre. El viaje es complicado ya que hay que llevar todos los aparatos para atender a Paula cuando se quede dormida. Su enfermedad, por ahora, no tiene cura. «La asociación estadounidense de Ondine esté recogiendo fondos para intentar encontrar una curación (www.cchsnetwork.org)», cuenta Silvana Teixeira. Mientras tanto, ella vela por los sueños de la pequeña Paula.

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