![]() The condition is also known as Pierre Robin sequence. Many children with Robin sequence also have a gap in the roof of their mouth ( cleft palate). Some children have breathing problems in their first months of life and others develop problems later. This can lead to problems with breathing and feeding. These features tend to block the baby’s airway. Additionally, surgery can correct your child’s cleft palate.Babies born with Robin sequence have a small lower jaw and a tongue placed further back than normal. If respiratory and feeding difficulties are adequately managed, your child’s prognosis is quite good. ![]() In some cases, however, mental retardation and central nervous system damage can occur from complications resulting from respiratory difficulties. Your child’s lower jaw will usually develop slowly over time and can fully correct by adult life. What’s in the future for a child with Pierre Robin Syndrome? Children with cleft palates may also need speech therapy. Consequently, ongoing monitoring is recommended. Children with cleft palates are prone to fluid buildup behind the eardrum that can affect their hearing or lead to ear infections. The timing depends on many factors including the severity of your child’s condition and the preference of his surgeon. The surgeries usually begin when your child is 6-19 months of age. Therefore, your child’s medical team will usually include his pediatrician and a craniofacial or cleft palate specialist. Surgery is rarely required on the lower jaw.Ī series of surgeries is usually necessary to repair a cleft palate. Most children develop a normal profile by age 6. The jaw may catch-up in growth during your child’s first 2-4 years. Feeding and respiratory problems decrease over time as the jaw develops and grows to a more normal size. Intubation (insertion of a tube to keep the trachea open), tongue-lip adhesion, use of a nasal prong, or tracheostomy (surgical opening into the trachea through the neck) may be necessary to maintain an adequate airway for your child. Your child’s respiration should be monitored at all times. This allows gravity to pull the child’s tongue forward and maintain an open airway. Outside of feeding times, infants should be placed in a facedown position. Careful feeding in an upright position using a modified nipple can help prevent choking. How can you help a child with Pierre Robin Syndrome?įeeding and respiratory difficulties are common. A child may be tested for these syndromes to see if any other disorder is involved. The features of Pierre Robin Syndrome can also be features of a multiple defect syndromes such as Trisomy 18 Syndrome (extra 18th chromosome) or Stickler Syndrome (a disorder of the connective tissue). There is no known prevention for Pierre Robin Syndrome and genetic counseling is recommended. Researchers have also looked at the possibility of maternal viruses and folic acid deficiencies as the cause of this condition but have found no conclusive evidence for these hypotheses. As a result, the tongue takes a posterior location that impairs the development of the palate. It has been hypothesized that the initiating defect of this condition is the arrested development of the lower jaw, which is believed to occur prior to the ninth week of fetal development. The exact cause of Pierre Robin Syndrome is not known. In addition to the features noted above, symptoms of Pierre Robin Syndrome may include choking on the tongue and natal teeth. It is usually determined at birth by clinical examination. Additionally, there are no special tests to confirm the condition in a newborn child. ![]() ![]() If a cleft palate is present, it may be identified through an ultrasound during pregnancy. There are no prenatal tests for this condition. How do you know if your child has Pierre Robin Syndrome? Pierre Robin syndrome is uncommon, affecting approximately one out of every 8,000-30,000 live births. Fact Sheet Continues Below How many children have Pierre Robin Syndrome? ![]()
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