Cure Aniridia

Shine the light on Aniridia



Ella's Story

Shine the light on Aniridia
Tags >> breathing
Jul 02, 2010
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Well seems like this will take forever me getting info up here but hopefully you will bear with me!

Ella had to have an NPA after we discovered problems with her breathing at an early age. We weren't happy that there was a possibility of a tracheostomy, so we sought a second opinion at Great Ormond Street via Michelle Wyatt, Consultant in Otalaryngology. She suggested an adenoidectomy which she performed and as standard at GOSH children have an NPA inserted post surgery to aid breathing. For the first time in a year Ella slept soundly that night after surgery - no snoring, straining to breath or loud noise. We had to keep watch in turns as we were convinced she wasn't breathing at all! The next day they removed this NPA and then the following night she slept without it - back to the noise. We were devastated. We thought we had put her through unnecessary surgery. Miss Wyatt explained that the best plan would be for us to be taught how to make up this NPA and use it on an ongoing basis until Ella's whole ENT area had had chance to develop and strengthen.

So we took her advice, were taught how to make this device up which was no mean feat. Cutting a tube to the required length, sewing it with suture to a holder and then affixing straps to attach to her baby face, it took a lot to think we could do this. Then we had to be taught how to insert the 9cm 'prong' down her nostril and learn how to use a usction machine to clear it, which ahd to come everywhere with us. Ella was wonderful to say in the least, she let us go about this and managed to cope with the 'prong' daily and still beam away.

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