Pierre Robin Sequence

It is during our darkest moments that we must focus to see the light - Aristotle

Pierre Robin Sequence
Pierre Robin Sequence

image by: Pierre Robin Sequence Foundation

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Why We Started This Foundation

Thought we should tell you about our ongoing story and why we started this foundation.

Joshua William Parkes was born 20 October 2008 via C-Section. He was diagnosed with a cleft palate at birth. We were referred to see a plastic surgeon regarding the cleft and he said Joshua also has Pierre Robin, that was all very scary for Grant and I as we didnt know what it was and what the implications were.

This all made feeding very hard in the beginning as Joshua could not latch to be breast fed or suck on a normal bottle. We used the Haberman Feeder for a while till we decided to cut slits in the Avent teat, this made drinking very easy for Joshua.

The problems started when…

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 Why We Started This Foundation

Joshua William Parkes was born 20 October 2008 via C-Section. He was diagnosed with a cleft palate at birth. We were referred to see a plastic surgeon regarding the cleft and he said Joshua also has Pierre Robin, that was all very scary for Grant and I as we didnt know what it was and what the implications were.

Pierre Robin Sequence Foundation

Pierre Robin Sequence Foundation (PRSF) is a Worldwide South African based non profit organisation that has been established to support families and individuals affected by Pierre Robin Sequence (PRS) and its associated syndromes.

A Piece of Kate

PRS is the name given to a group of 3 markers: micrognathia (small and recessed jaw) , cleft palate & glossoptosis (larger tongue). Sometimes it's part of a syndrome. Sometimes it's considered isolated. In all cases, it presents a challenge for parents that most were not at all prepared for. This is our story.

Children's Craniofacial Association

Pierre Robin Sequence is a condition in which the lower jaw is abnormally small. There are also problems with the tongue falling backward toward the throat. In these patients a cleft lip and a cleft palate may or may not be present.

CLAPA

Around 50 babies are born with Pierre Robin Sequence ('PRS') in the UK every year.

FACES

Pierre Robin is not a syndrome or a disease. It is usually referred to as Pierre Robin Sequence, although it is also know as "Pierre Robin Malformation Sequence", "Robin Anomalad", and "Cleft Palate, Micrognathia and Glossoptosis." It is the name given to the following birth defects if they appear together...

NORD

At present, the exact cause of Pierre Robin sequence is unknown. The most widely held view is that failure of the lower jaw to fully develop early in gestation causes the tongue to be positioned high in the oral cavity, which, in turn, prevents palate closure. The disease can occur by itself, and less commonly, as a feature in multiple defect disorders.

Patient

This condition was originally considered to be a single clinical entity but is now thought to represent a particular outcome of an abnormal developmental process, associated with a range of clinical entities and is more commonly referred to as Pierre Robin sequence (PRS). Pierre Robin, a French dental surgeon (1867-1950), is identified with the sequence/syndrome due to his role in the early part of the twentieth century, describing the typical triad of features and his many articles on its management.

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