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Nació sin mandíbula, no puede comer, hablar o respirar correctamente

Un hombre de 41 años nacido sin mandíbula que no puede comer, hablar o respirar correctamente admite que el acoso lo llevó al suicidio, pero dice que encontrar el amor con su esposa lo ayudó a creer en sí mismo

Por Staff / La Voz - 19 mayo, 2022 - 01:54 p.m.
Nació sin mandíbula, no puede comer, hablar o respirar correctamente

Un hombre que experimentó acoso severo a lo largo de su vida después de nacer con la mitad de su cara perdida reveló que ya no permite que su condición lo detenga y se ha casado desde que mejoró su autoestima.

Joseph Williams, de 41 años, de Chicago , nació con una condición extraordinariamente rara llamada síndrome facial otofacial que lo dejó sin mandíbula.

El soldador dijo que la gente se ha escapado de él por miedo, pero él no ha permitido que su condición lo detenga de nada en la vida.

Después de conocer a su esposa, Vania, de 39 años, en 2019, Joseph está felizmente casado y le encanta viajar y socializar. 

'Yo era un gemelo, pero el otro bebé falleció antes de que naciéramos.

'Cuando tenía solo un par de días, me llevaron de Illinois, donde nací, a Chicago, para múltiples cirugías. 

“Tuve un injerto de hueso y piel cuando intentaron construirme una mandíbula, pero a medida que crecía, mi cuerpo lo rechazó y no tuvo éxito.

“Y también me dieron en adopción, lo que me llevó a conocer a mi familia adoptiva.

“Crecer fue duro y nacer así me ha causado muchos problemas, pero he tratado de que no me afecte.

'No puedo comer, hablar o incluso respirar correctamente.

Tengo un tubo en el estómago en el que puedo colocar comida licuada, pero esto significa que nunca he probado comida. 

El síndrome otofacial es una deformidad congénita rara en la que una persona nace sin mandíbula y sin mentón. 

En casi todos los casos, el niño no sobrevive porque no puede respirar ni comer adecuadamente. 

Incluso con la cirugía reconstructiva, la lengua está extremadamente subdesarrollada, lo que a menudo imposibilita la respiración y la deglución sin ayuda. 

El primer desafío para la supervivencia es la respiración asistida y la alimentación tubárica. Este es un asunto de por vida, que generalmente requiere que el paciente pase casi todo el tiempo bajo atención hospitalaria directa.

En 2008, Alan Doherty, entonces de 19 años, de Donegal, se convirtió en el centro de atención nacional cuando se embarcó en una serie de operaciones de 18 meses para un nuevo mentón.

A sus padres les habían dicho que era poco probable que sobreviviera al nacer y pasó gran parte de sus primeros años en el hospital.

Si bien podía arreglárselas para no poder hablar ni tragar, le resultaba difícil lidiar con la gente que lo miraba constantemente en la calle. 

Después de un gran esfuerzo de recaudación de fondos por parte de amigos, familiares y otras personas en el área local, se convirtió en la primera persona en someterse a una serie de operaciones para crear una nueva mandíbula y mentón. 

En un proceso de nueve operaciones diferentes, los médicos tomaron un trozo de hueso de su cadera y lo tallaron en forma de mandíbula.

Luego implantaron el hueso en su espalda para ayudarlo a desarrollar nervios y tejido de apoyo a su alrededor.

Más tarde, se quitó, antes de que se adhiriera a su rostro, y se agregó tejido adicional para que su nuevo mentón se viera lo más realista posible.

Sin embargo, en 2009, cuestionó si debería haberse sometido a la cirugía. 

Hablando con el Irish Independent , dijo que las operaciones le habían dejado cicatrices en la cara y cicatrices profundas en la espalda y la ingle.

Él dijo: 'No esperaba estar todo destruido, en mal estado.

"Si hubiera sabido cómo quedarían mi espalda y mi mandíbula antes de someterme a cualquiera de los procedimientos, entonces tal vez no me habría sometido a las operaciones".    

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