Fred's
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Pierre Robin Sequence This page is not intended to be a technical guide, I hope to gather some useful links together here. I hope that the diary and photos give a parent's perspective.
Essentially Pierre Robin is the guy that first put a name to the condition with which Fred was born. It is known as a sequence because it's symptoms are thought to be the result of a sequence of events. When Fred was in the womb, he was breech for some time and actually transverse for a while too. In this position, he had his chin down upon his chest. As he grew, this restricted the growth of his chin and pushed his tongue back and up into the roof of his mouth and into his throat. This in turn prevented his palate from closing up.
The severity can vary from one child to another, but generally causes problems with feeding and breathing in the early months. Although the cleft palate needs repair, the chin will grow on it's own, almost catching up with the rest of the face within a year or so. The timing of the palate repair operation will depend upon the growth of the chin, although I suspect that this might vary from place to place.
When I first learned that Fred had Pierre Robin, I looked around on the internet and found all sorts of scary things about parents having to shove tongue prongs down the nose, tracheostomies.. we were very lucky to be in the care of a team who specialised in a much less intrusive or aggressive form of care, where the emphasis was on learning to handle Fred, controlling feeding and breathing through a carefully managed regime, slowly encouraging his development at the right pace.
It's been hard work, there's no denying that, but Fred is a healthy, happy, 'normal' child and I believe that this approach to the care of his condition has really played an important part.
I hope to list some useful links here when I've gathered some together.
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