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Noah has Pierre Robin syndrome and Stickler syndrome. Read more about his experience with the Plastic Surgery team at UPMC Children’s Hospital of Pittsburgh.
Pierre Robin (pronounced "pea-AIR roe-BAN") sequence is a rare developmental condition that affects a child's breathing and feeding. One out of every 8,500 to 14,000 babies are born with the condition. It's called a "sequence" because it has a set, or sequence, of characteristics, including:
Some babies with the condition may also be born with a cleft palate, which is a hole in the roof of the mouth.
There at least 15 syndromes related to Pierre Robin sequence, the most common being:
Fewer than half of babies born with Pierre Robin sequence have a related syndrome.
A baby develops the condition while in the womb. Doctors aren't sure what causes it, though possible causes include:
Twins may be more likely to have the condition.
If your baby has Pierre Robin sequence, they may have problems eating and breathing. Poor eating can cause delayed growth and development. Breathing problems can be very serious because the baby could stop breathing altogether.
The symptoms of the condition are caused by the shape of the baby's mouth and include:
Often, your doctor may notice the condition while your baby is still in the womb; they'll be able to detect abnormalities in their growth through ultrasounds.
Sometimes a baby is not diagnosed until shortly after birth when they have problems breathing. If your baby's doctor suspects Pierre Robin sequence, they may request an evaluation by a specialist or transfer to the Neotatal Intensive Care Unit for further monitoring.
The Cleft-Craniofacial Center at UPMC Children's Hospital of Pittsburgh specializes in treatment for Pierre Robin sequence. We treat each case individually, based on your child's specific diagnosis and symptoms.
Your team may include:
Our team will fully evaluate your child for any other health issues they might have related to Pierre Robin sequence. Treating the condition can take a long time. In fact, our team may work with your child for several years. This is because some health problems related to the condition need more attention than others.
We'll provide you with the knowledge and tools to care for your child with Pierre Robin sequence, including the best way to feed them and the best sleeping positions for easier breathing. We can also recommend resources for you to support your own mental health and well-being. Caring for a baby with this condition can be stressful, so it's important that you look after your health, too.
Many children with the condition don't need surgery, as a small jaw gets larger as they grow. Oftentimes, non-surgical interventions are enough to help your child eat and breath. These can include sleeping on their belly and nasal breathing and feeding tubes. Sometimes, surgery is necessary to help children eat and breathe more easily while their jaw is still growing. G-tube placement, mandibular distraction (jaw distraction), tongue lip adhesion, and rarely tracheostomy are some surgeries that are performed to treat Pierre Robin sequence. Also, your child may need corrective surgery if they have a cleft palate, but this procedure may not be necessary right away.
Since babies with the condition are prone to ear infections, their doctor may also recommend an ear tube surgery.
Before surgery, you should have a list of questions prepared for your team. Some questions you may want to ask include:
Children with Pierre Robin sequence generally have a good prognosis, or outcome. The key is early treatment and close follow-up by an experienced medical team to prevent problems that may be caused by the condition.
Meet our team at UPMC Children's Hospital of Pittsburgh's Cleft-Craniofacial Center and learn about our treatment options, or contact UPMC Children's Hospital of Pittsburgh at 412-692-8650.
Children's Hospital's main campus is located in the Lawrenceville neighborhood. Our main hospital address is:
UPMC Children’s Hospital of Pittsburgh
One Children’s Hospital Way
4401 Penn Ave.
Pittsburgh, PA 15224
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