1. Learn Appropriate Bottle-Feeding Techniques
Since babies with Pierre Robin syndrome almost always have cleft palates, it's important for parents to learn how to feed them correctly. In most cases, the nurses in the neonatal intensive care unit will demonstrate the correct feeding techniques for parents. A cleft palate makes it difficult for your baby to create enough suction on a nipple to breastfeed or use ordinary bottles. Creating a large hole in the top of a nipple will make it easier for him to access the milk. Additionally, holding your baby in an upright position will give him the benefit of gravity and prevent milk from flowing through the cleft and into his nose. To provide even more assistance, you can apply pressure to the bottle insert while feeding.
2. Lay Infants in Prone Position Only
Babies with Pierre Robin syndrome are in grave danger of choking on their tongues because their tongues retract and can obstruct the airway. The most common time for this to happen is while sleeping. Consequently, it's important to always lay your baby down in a stomach-down position. This runs counter to what most pediatricians recommend for infants, but the danger of the tongue-choking hazard overrules that advice. The prone position allows the tongue to fall forward and keeps the airway clear. Early in life, your child will not have the strength to roll over, but she will as she gets older. Use baby positioners to keep your child in the prone position while sleeping.
3. The Prognosis Is Good
Managing a condition like Pierre Robin syndrome can be overwhelming, but it's important to remember that the prognosis is good for the future. If you can manage to keep your child well nourished and avoid airway obstructions, he should grow and develop normally. Since there is no genetic abnormality, the jaw will continue to grow normally as well. Most surgeries to repair a cleft palate are done before the child turns 2 years old. If needed, surgeries to extend the jawbone are typically done before 4 years old. These surgeries should correct airway and feeding problems. By the time your child is ready to begin school, there should be little-to-no residual effects of the condition that orthodontics can't fix.
