Glossary: words you’ll hear

Cleft appointments come with a lot of new words. Here are the ones families hear most, in plain language. Bring this list to your next visit, and never be shy about asking a doctor to explain a word again. They'd rather you ask.

The cleft itself

Cleft lip

An opening in the upper lip present at birth. It can range from a small notch to a full split reaching the nose.^[2]

Cleft palate

An opening in the roof of the mouth (the palate) that forms when the tissue doesn't join completely before birth.^[1]

Orofacial cleft

The umbrella medical term for cleft lip, cleft palate, or both.^[1]

Unilateral / bilateral

A cleft lip on one side (unilateral) or on both sides (bilateral).^[2]

Incomplete / complete

Roughly, how far the cleft goes. A cleft lip may be just a small notch (incomplete) or a complete split that reaches the base of the nose.^[3]

Hard palate / soft palate

The roof of the mouth has a bony front part (hard palate) and a softer back part (soft palate). A cleft palate can affect either or both.^[2]

Submucous cleft palate

A cleft hidden under the lining of the roof of the mouth, where the muscles of the soft palate didn't join normally. It can be hard to detect and is sometimes missed at birth.^[2][4] One possible sign is a split (bifid) uvula, the small piece of tissue at the back of the throat.^[4]

Alveolus (alveolar ridge)

The bone in the gum where the teeth sit. A cleft lip can extend into it.^[9][2]

Fistula

A small opening that remains in the palate. It can sometimes be closed during a later operation such as a bone graft.^[9]

Syndrome

A group of features that occur together. Clefts are found in more than 400 syndromes; NIDCR says approximately 30 percent of cleft defects are associated with one.^[6] Examples include 22q11 deletion syndrome.^[12]

Pierre Robin sequence

A set of features: a small lower jaw, a tongue placed further back than normal, and blocked airways.^[14] Cleft palate is often part of it.^[15]

The team

Cleft team / craniofacial team

A group of specialists who work together on a child's care. Cleft palate teams treat cleft lip and/or palate; craniofacial teams treat differences of the face, head or skull. Many teams are both.^[5]

ACPA-approved team

A team recognized by the American Cleft Palate-Craniofacial Association. It must include a care coordinator, orthodontist, speech-language pathologist and surgeon, with access to other specialists.^[16]

Speech-language pathologist (SLP)

A specialist in speech, language and feeding, and a required member of an ACPA-approved team.^[16] Speech therapy is a common part of cleft care.^[1]

Audiologist

A hearing specialist.^[6] Hearing problems are common with clefts, so early and repeated hearing tests are recommended.^[3]

Orthodontist

A dental specialist who moves teeth and guides jaw growth, for example by expanding the palate and fitting braces.^[17]

Treatments and procedures

Specialty bottle

Babies with a cleft palate can't create the suction needed to feed from a regular nipple, so they use specially designed bottles; some let the baby bite to get milk, others are squeezed in time with sucking.^[13]

Nasoalveolar molding (NAM)

A custom appliance used in some babies, around 1 to 4 months old, to narrow a wide cleft and shape the nose before surgery.^[8]

Cheiloplasty / palatoplasty

Medical names for cleft lip repair and cleft palate repair.^[7]

Glue ear and ear tubes (grommets)

Glue ear is fluid behind the eardrum, which is common with cleft palate.^[12] Ear tubes are small tubes placed through the eardrum to help, because that fluid can cause some hearing loss.^[11]

Hypernasality

Speech that sounds too nasal, because sound energy is going into the nose on sounds that should come out of the mouth.^[10]

Velopharyngeal insufficiency (VPI)

A structural difference in the soft palate and throat area (the velopharynx) used to direct air through the mouth during speech. It can show up as hypernasal speech, including with a submucous cleft.^[10]

Alveolar bone graft (ABG)

An operation that fills the gap in the gum bone with bone (usually from the hip) so adult teeth have bone to grow into, usually at about 8 to 12 years old.^[9]

Orthognathic (jaw) surgery

Surgery to realign the jaws when braces alone can't, usually in the late teens once growth is complete.^[8]

Rhinoplasty

Surgery on the nose. A surgeon may shape the nose tip during early cleft repair,^[7] and some people choose nose surgery later, after growth is complete.^[8]

Hear a word that isn't here? [Invite readers to send in words to add, if Brandon wants this]