Pierre Robin Sequence is the name given to a congenital disorder that presents as a group of problems including cleft palate, small or recessed jaw and some degree of airway obstruction. There is no single special test to confirm this condition and doctors make the diagnosis only after carefully studying your child.
Children with Pierre Robin Sequence usually experience some degree of airway obstruction. It is usual for most serious problems to improve with growth once breathing problems are managed and the child is able to feed.
Typically, the child's lower jaw is abnormally small, a wide U-shaped cleft palate (where the roof of the mouth is not joined up) is usually present, the tongue is out of place (seated well back in the mouth cavity) and often tends to fall back and block the airway. The mouth cavity is smaller than usual, muscle development or coordination in the mouth may be poor and often the airway itself can be narrow.
Breathing difficulties are a serious problem for some children with Pierre Robin Sequence. Often, some form of airway assistance will be needed and your child may require nursing in the children's Intensive Care ward for a period of time.
The problems of Pierre Robin will vary quite a lot from one child to another and the aim of treatment will be to meet your child's own special needs. Feeding problems are usually related to breathing problems. Children with narrow airways have to work very hard to obtain the oxygen they need and even harder still when trying to feed. This is very tiring for them and causes them to use up a great deal energy (calories) that may lead to weight loss and failure to thrive. Keeping your baby well fed is very important. It will help your child to grow quickly, become stronger and be more able to breathe without help.
For more general information look also at Wide Smiles for helpful resources and information for parents.
A common problem in coping with the disorder, is that some of the terminology you hear or read may be unfamiliar. This is quite a common frustration and very confusing. ALWAYS ask for a 'plain English' explanation and PLEASE do not be satisfied with an explanation you only half understand. This simple but useful glossary may help to fill in some of the gaps.
Back To Pierre Robin Contents Page
Back to Syndromes and related conditions
Copyright © 2000, Michelle Cruse, Last Updated - 26/01/2000 16:10:17