PIERRE ROBIN SEQUENCE

Airway Management

• Preventing airway obstruction is very important. Lack of oxygen can cause permanent brain damage.
• Your child's medical team will explain to you the problems your child may have and the reasons for their choice of treatment.
• Always ask questions if you any explanations are unclear or confusing. Your child's medical team is there to help and support you as well and your child.
• Some children will have only a few problems while others may have many more.
  Remember, there is no single set method of managing these children and what works for one child may not suit another.

• If your child has required an airway tube, there is no real way of knowing how the child will manage without it until the tube is removed. It may take a few days or more to be sure that the child can continue without help and sometimes there is a need for the tubes to go back in. This can be very upsetting for parents. Try not to be discouraged. Growth of the child and the passage of time will usually bring a big improvement for most problems.

Positioning:

The aim is to provide the best airway possible, requiring the least effort by the child. Lying prone (on the tummy with the head to one side) is generally the most recommended position or, instead, nursed from side to side. This reduces the risk of the tongue naturally falling back and obstructing the airway.

Pierre Robin children are more at risk of 'SIDS' (cot death) sleeping on their backs than they are on their tummies. Babies can be safely fed, changed, bathed and nursed while on their tummy if necessary. In many hospitals it is strongly recommended that the child NEVER be placed on it's back because such a position forces these children to work harder to breathe. It tires them faster and puts them at a much higher risk of airway obstruction. For this reason, too, chairs, bouncers or rockers that keep baby semi-reclined (leaning back) are not recommended. The severity of the obstructive breathing will decide the positioning required and for how long.

Naso-Pharyngeal Tube:

This tube goes in through the nose (naso), down past the back of the tongue and sits at the back of the throat (pharynx). It can be connected to oxygen and used for long periods of time. Tube feeds are usually needed to stop liquids going into the lungs.

Endo-tracheal Tube:

This tube sits further down the back of the throat and past the vocal cords, closer to the lungs. Its' use means that your child needs a more serious form of airway support. Baby will be nursed in the Intensive Care ward and a machine will assist their breathing.

Glossopexy:

Also called a Tongue-Lip Adhesion (NOTE: use of this procedure will vary from place to place, country to country). Glossopexy is used when the tongue is the sole cause of the airway obstruction. It is an operation that joins the tongue to the lip, pulling it forward to prevent the tongue from falling back and blocking the airway. This is generally reversed by one year of age. Baby can eat and drink normally and be looked after at home.

Tracheostomy:

In very rare cases, narrow or obstructed airways that are unlikely to improve for a long period of time may need to be managed this way. A small hole is cut into the neck and a permanent airway tube put in. This is reversed when the child is older and able to breathe normally. Tracheostomy is generally avoided if possible. The aim is to prevent the undesirable situation of brain damage which can occur in children with low oxygen levels from continuous or significant episodes of airway obstruction. Tracheostomy allows the child to breathe properly, maintain healthy oxygen levels and return home faster. For further information on tracheostomy, a good reference for parents can be found on Aaron's Tracheostomy page.

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Copyright © 2000, Michelle Cruse, Last Updated - 26/01/2000 16:00:22