How to Manage Pierre Robin Syndrome

You are having your baby and the doctor comes out and informs you that your child has Pierre Robin Syndrome. You have no idea what this is or how to deal with it. Pierre Robin syndrome is a condition present at birth in which an infant has a very small lower jaw, a tongue that tends to fall back and downward, and a soft cleft palate. Questions rush through your mind, what is it, what caused it and how can it be managed

Things You'll Need

• surgery, feeding tubes, time

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Instructions

• 1

  Causes for Pierre Robin syndrome are unknown, it may be part of many genetic syndromes. However the lower jaw develops slowly over the first few months of life before birth, but speeds up during the first year after birth. The falling back of the tongue may cause choking episodes and feeding and breathing difficulties, especially when the child sleeps.Identifying indications of Pierre Robin Syndrome may include Cleft soft palate, High-arched palate, Jaw that is very small jaw with significant receding chin. The Jaw may be placed unusually far back in the throat. The child may have a large tongue in relationship to the jaw.

• 2

  Recurring ear infections may be a sign of Pierre Robin Syndrome and there may be a small opening in the roof of the mouth, which if not monitored, can cause choking.

• 3

  Infants with this condition should not be put on their back. If babies are laid on their backs they run the risk that their tongue may fall backwards and block the airway. In some instances the baby may require a tube through the nose and into the airway to avoid airway blockage. Surgery may be performed to prevent upper airway obstruction. A surgery to make a hole in the windpipe is sometimes required.

• 4

  Feeding must be done very carefully to avoid choking and breathing liquids into the airway. Choking and feeding problems may go away on their own as the jaw grows. During the early stages feeding through a tube may occasionally be necessary to avoid choking.

• 5

  Difficulty breathing may lead to low blood oxygen and brain damage.