Pierre Robin Sequence
It is during our darkest moments that we must focus to see the light - Aristotle
image by: Pierre Robin Sequence Foundation
HWN Recommends
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…
Resources
Jack’s journey managing Robin sequence
The MRI revealed that Jennifer and husband Matt’s unborn baby had Robin sequence, a condition where a small lower jaw or micrognathia pushes the tongue backward, making it difficult to breath. “No one I knew had ever heard of the condition, but I told myself what I tell parents at work all the time — don’t Google it,” says Jennifer.
Micrognathia & Pierre Robin Sequence
A small jaw is often seen as part of Pierre Robin Sequence. Pierre Robin occurs in about one per 8,500 live births. It is called a "sequence," because while the baby is growing in the womb, the lower jaw does not grow enough. This causes the tongue to be pushed back and the palate bones to remain separated in the middle. Babies born with Pierre Robin may have difficulty with breathing, feeding, and/or sleeping. It can be a very mild problem to quite severe.
Pierre Robin Sequence
Pierre Robin sequence (PRS) is classically described as a triad of micrognathia, glossoptosis, and airway obstruction. Infants frequently present at birth with a hypoplastic mandible and difficulty breathing. The smaller mandible displaces the tongue posteriorly, resulting in obstruction of the airway. Typically, a wide U-shaped cleft palate is also associated with this phenomenon. PRS is not a syndrome in itself, but rather a sequence of disorders, with one abnormality resulting in the next.
Pierre Robin Sequence and Stickler Syndrome
When Mercy was born, she did not breathe. It became readily apparent she had a cleft palate (not lip – these are two separate diagnoses) and her tongue was obstructing her airway. Intubation was the only way she was going to survive.
Robin Sequence: From Diagnosis to Development of an Effective Management Plan
Although RS is a well-recognized clinical entity, there is wide variability in the diagnosis and care of children born with RS.
Robin Sequence: More Than a Receding Chin
There are two potential causes: a failure of the lower jaw to develop or form properly (known as syndromic Robin sequence), or intrauterine pressure distorting the normal development of the jaw (known as deformational or nonsyndromic Robin sequence).
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.
Introducing Stitches!
Your Path to Meaningful Connections in the World of Health and Medicine
Connect, Collaborate, and Engage!
Coming Soon - Stitches, the innovative chat app from the creators of HWN. Join meaningful conversations on health and medical topics. Share text, images, and videos seamlessly. Connect directly within HWN's topic pages and articles.
