Your baby may develop reflux. It is a common problem for babies with Pierre Robin (or, alternately, the presence of Pierre Robin may aggravate a pre-existing reflux condition). Reflux occurs when contents of the stomach gets drawn back up into the oesophagus. This is usually compounded in Pierre Robin Sequence by negative pressure created within the chest cavity from obstructed airways. Erosion of the oesophagus walls (the natural tube that connects the mouth and stomach) from burning stomach acid can be very painful for a child and reflux may, at worst, lead to fluid falling into the lungs. Medication and positioning the child upright after feedings may be recomended in the first instance. If reflux becomes a particularly traumatic or dangerous problem, your child's doctors may wish to perform an operation to correct it. This will be explained to you if it happens and be sure to ask as many questions as you need until you are comfortable with any plans made by your child's doctors.
Most children with cleft palates have problems with their ears. Fluid can often build up in the ears and, over a period, this may cause hearing loss. Hearing loss can cause a delay for children in reaching usual child development milestones. Grommets (small tubes to allow fluid drainage) are usually placed in the ears at the time of palate repair. Signs of earaches can be crying, irritation, fevers and fluid leakage from the ears. Have a look at the extensive Wide Smiles resources on ear tubes.
If your baby catches a cold or flu, the airways may become inflamed and swell. This is quite normal for any child but might cause a narrow airway of the child with Pierre Robin Sequence to become smaller and re-obstruct. Study your child's normal breathing patterns so you can tell when they are in difficulty and be particularly watchful in those times when colds and flu are about.
In isolated Pierre Robin Sequence, the jaw may 'catch up' to normal growth by around age 6 or so. If however, Pierre Robin is associated with another syndrome, then this may not happen at all.
In some rare instances, a child with reduced oral stimulation from experiencing extended periods of tube feeding may not want to have anything by mouth. For some children this becomes a very major struggle for quite a while. Your speech therapist will help teach ways of preventing or reducing this possibility. See also the Wide Smiles resources on oral defensiveness including some useful ideas from other parents.
Due to the reduced size of the oral cavity, children with Pierre Robins Sequence may experience minor to severe problems with their teeth. Overcrowding of teeth can be one complication and it may be necessary for your child to receive orthodontic care in the future. See Wide Smiles for comprehensive information on dental issues.
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Copyright © 2000, Michelle Cruse, Last Updated - 26/01/2000 16:04:17