![]() ![]() This machine checks your baby’s heart rate and breathing constantly. Most babies with Pierre Robin sequence need a cardiac apnea monitor at home. Treatment for Pierre Robin sequence may include: Treatment options are individualized to your child's needs. A geneticist can help determine whether your baby has a related syndrome through genetic testing. After the baby is born, Pierre Robin sequence is diagnosed through a combination of physical exam and other tests as requested by your child's doctor. Pierre Robin sequence can be diagnosed prenatally (before birth) via a routine ultrasound. Your child should see a speech pathologist who is experienced with children who have cleft palates. ![]() Your child may have trouble making some sounds when he or she begins to talk. The otolaryngologist should be a doctor who works with a cleft palate team or is familiar with caring for babies with cleft palate. Your baby should also be checked by an otolaryngologist (ear, nose and throat doctor). If your baby has an ear infection, your child's doctor may prescribe an antibiotic. These symptoms often happen at the same time as a cold or runny nose. If your baby develops a fever, is irritable, is crying, is not sleeping well or is pulling on his or her ears, the doctor or nurse practitioner should be consulted. Fluid and infection can cause a temporary loss of hearing. When fluid sits in the ear, bacteria can grow and cause an ear infection. ![]() When a baby has a cleft palate, it is easy for fluid to collect inside the ears. A feeding team can then be consulted for recommendations in creating a specialized plan to feed your baby safely and efficiently. To determine whether your baby can suck, swallow and breathe safely, a doctor may order oxygen level tests and swallowing tests that are done via video X-ray during feeding. It is even harder for babies to suck and swallow when they have trouble breathing. The baby can only get the formula out of a bottle by pressing the nipple against the gums or roof of the mouth using the tongue. The open palate makes it hard for the baby to suck. ![]() If your child also has a cleft palate, he or she may have some trouble feeding as a newborn. However, a baby with Pierre Robin sequence will always have an airway that is smaller than normal. The baby also learns to control the tongue over time. Most babies with Pierre Robin sequence outgrow their breathing problems by the time they are 6 months to 8 months old because the jaw grows quickly and moves the tongue away from the back of the throat. Treatment may include special sleep positioning requiring an apnea monitor, oxygen and/or an operation to help them breathe better. The sleep study results will help guide your doctor in determining what treatment is best for your child. Your baby will be observed while awake, asleep, eating and, most likely, in a car seat. A sleep study can check your baby’s breathing pattern, heart rate, oxygen level in the blood and carbon dioxide levels. If your baby shows signs of airway blockage, you should report it to his or her doctor right away the doctor may perform tests to determine whether special treatment is needed. Cyanosis (turning blue) is another sign of airway blockage. Your baby may also sweat and be restless and/or irritable. Your baby’s breathing may be noisy or sound like snoring or a high-pitched noise called stridor. The first sign of airway blockage (obstruction) is often rapid breathing. Pierre Robin sequence can show various symptoms that cause complications with: Stickler syndrome involves small bones of the face, eye abnormalities, joint problems and hearing loss and is typically caused by changes in the collagen gene. One in 2,000 to 30,000 babies has Pierre Robin sequence, according to the Cleft Palate Foundation.Īpproximately half of babies with Pierre Robin sequence are also born with one or more other conditions, such as Stickler syndrome. Pierre Robin sequence is named after French doctor Pierre Robin, who first described it in 1923. ![]()
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