Information taken from Children’s Omaha and Cleft Line Foundation
WHAT IS PIERRE-ROBIN SYNDROME?
Pierre-Robin syndrome may also be known as Pierre-Robin sequence. This is a condition that affects the lower jaw and palate. It is called a sequence due to a series of events which cause a cleft palate as well as a displacement of the tongue. A small jaw causes the tongue to be positioned higher in the mouth than normal, therefore impacting correct closure of the palate.
WHAT ARE THE CHARACTERISTICS OF PIERRE-ROBIN SYNDROME?
The following characteristics are typically present:
- Small lower jaw
- Cleft palate
- Large tongue that falls back into the mouth
The following characteristics may also be present:
- Feeding problems
- Breathing problems
- Sleep apnea
- Ear infections
- Hearing loss
HOW IS FEEDING AFFECTED?
Children who have a cleft lip may have no problems breast feeding or using a bottle. However, babies who have a cleft palate may require adaptations to the nipples and bottles. The palate keeps food and liquid from entering the nose; therefore special bottles may be needed to stop this from happening. A feeding specialist would work with you to achieve an adequate feeding method to ensure proper nutrition. The speech-language pathologist may work closely with an occupational therapist and nurse to determine the best position for feeding as well as the best bottle for your child.
HOW IS SPEECH AND LANGUAGE AFFECTED?
Studies have shown that children with cleft lip/palate have delayed expressive language, slower development of sounds and words, and a smaller inventory of sounds in infancy. Therefore, it is important to talk to your child and encourage your child to talk to you. Some children will catch up after the cleft repair; however, others will require continued speech therapy for a longer period of time following surgery. If your child’s teeth do not properly align your child may have distorted production of the /s/ and /sh/ sounds. Children who have cleft lip/palate may have the following:
- Atypical consonant productions (especially with /m/, /n/, /ing/)
- Speech may sound nasal like they are talking through their nose
- Abnormal nasal airflow through the nose
- Nasal or facial grimaces to compensate for difficulties with speech
WHAT CAUSES PIERRE-ROBIN SYNDROME?
The cause of Pierre-Robin syndrome is unknown; however, studies have found that there is not a genetic link. Some researchers believe that the positioning of the fetus at the beginning of pregnancy may be linked to the syndrome.
OUR APPROACH AT KEY THERAPIES:
We will develop an individualized treatment plan for each child based off of his / her current needs. We will work closely with physicians, nurses, occupational therapists, and other medical professionals. Furthermore, a home program will be taught to caregivers so that follow-through can be completed at home.