29/05/13 - The Terminology of Clefts

When you have a child with a disability or illness, you become an expert in the field pretty quickly, out of necessity. You are their advocate, you need to know the important questions to ask on their behalf to ensure the right care, and without even trying to you start talking like a doctor. I experienced this with Ellie - becoming fluent in doctor-speak, and its no different with Ellie's journey. Sometimes I forget that not everyone knows what a columella is, but for the most part I always try to explain things in "normal" terms. But for anyone that's interested, here's a few terms that we use in our everyday lives now:

Acoustic nerve: a nerve in the inner ear that sends sound information to the brain. This is the area that ellies hearing fails in, because the nerve is blocked by fluid is her ears

Alveolar ridge: the bony ridge where the teeth are held in the jaw. Ellie is missing two pieces of this, which will need to be built with a bone graft later on

Articulation: the ability to use the mouth to make speech. Ellie can't articulate correctly because of her missing palate and different sucking technique

Audiologist: a person who studies sound and hearing

Auditory brainstem response: a test that measures the response of the brainstem to sound. This is the one that Ellie passes, showing that her hearing is only affected by a blockage

Bilateral cleft: a cleft on both sides of a lip or palate. 

Bone graft: a surgery to insert bone in to the affected part of the jaw. This is the part of Ellie's journey that scares me the most, as its done when she's about eight or nine years old and will well and truly know what's going on

Cleft: a split or separation

Cleft lip: a congenital split in the upper lip

Cleft palate: a congenital split in the roof of the mouth

Columella: the front part of the tissue between the nostrils. Ellie's is virtually non-existent, which is why her nose is currently so flat. She will have surgery next year to lengthen it and hopefully improve the appearance of her nose

Conductive hearing loss: a loss of hearing caused by a problem in the middle or outer ear. This is what Ellie has, hers is caused by a blockage of fluid in her ear and changes in severity from day to day, depending on the amount of accumulated fluid.

Congenital: born with

Craniofacial: relating to the skull and face. 

Cuspid teeth: the pointed canine teeth on either side of the front teeth. Ellie won't have these, because there is no jaw there for them to grow from

ENT: an ear, nose and throat specialist.

Electrodes: soft pads that stick to parts of the body during some tests. Covered wires connect the electrodes to machines. 

Eustachian tube: a tube that runs from the middle ear to the back of the throat and allows air pressure on both sides of the ear drum to stay equal. This is where the fluid builds up in Ellie's ears

Fistula: an abnormal opening or gap. Fistualas are a common complication of the palate repair and often the child needs a second repair to close them

Functional: working properly

Grommets: small tubes inserted in the ear to drain fluid. Ellie will have the done with her palate repair, and they will be replaced regularly as she outgrows them

Hard palate: the bony part of the roof of the mouth, behind the teeth. Ellie has a bilateral cleft in her hard palate

Hypernasality: a speech problem in which a persons voice sounds too nasal. It is often caused by an opening in the palate that lets sound move through the nose

Hyponasality: a speech problem in which a person has trouble producing nasal sounds because the voice sounds can not move in to the nose

IV: a tube in a vein that allows food, fluids or medication to pass directly in to the bloodstream

Inner ear: the innermost part of the ear where sound information is sent to the brain through the acoustic nerve

Malocclusion: a poor alignment of the upper and lower teeth. This is very common in cleft affected children, because their jaw hasn't formed correctly to support the teeth

Mandible: the lower jaw bone

Maxilla: the upper jaw bone

Middle ear: the ear drum and space behind it

Nasal: relating to the nose

Nasal air escape: the escape of air through the nose when pronouncing consonants

Nasal ala: the part of the nostril joining the cheek

Nasal regurgitation: the escape of food through the nostrils during feeding. This happens with both milk and solids, and presents quite a big mess. It also means that Ellie doesn't really get as much food as it seems because she loses a lot out her nose

Nasal septum: the wall of tissue that divides the nostrils. This is where Ellie got a lot of sores with the haberman teat rubbing in the beginning

Nasendoscopy: a test that uses a small camera to record how the soft palate is working

Occlusion: the way the upper and lower teeth fit together

Occupational therapist: a person that helps people with daily care activities like feeding and bathing. Ellie will see an OT for development issues

Orthodontist: a dentist who uses braces and other devices to correct problems with teeth and jaws. Ellie's orthodontist will play a huge part in later years

Otis media: a middle ear infection. The build up of fluid in her ears makes Ellie more susceptible

Otoacustic emissions: a test that records how the inner ear responds to sound. Ellie's audiologist will perform this test regularly to monitor her hearing loss

Outer ear: the part of the ear you can see and the ear canal

Palate: the roof of the mouth, where Ellie's cleft is.

Plastic surgeon: a doctor who repairs the function and appearance of parts of the body. Doctor Kimble is Ellie's plastic surgeon and a bit of a hero in our house

Pre-maxilla: the centre of the bony ridge that holds the teeth

Prolabium: the central part of the upper lip between the mouth and nose

Soft palate: the moveable part of the roof of the mouth behind the hard palate. It is critical for speech. Ellie's cleft is so severe that she has no soft palate at all. 

Speech pathologist: a person who evaluates speech and helps improve speech. Speech pathologists are also the first point of call for feeding issues, because the way a baby feeds affects their speech later on. Ellie has two incredible speech pathologists in Hobart.

So that's the basics. Don't worry though, I will still try to speech human rather than doctor on the blog, but now if I drop the odd prolabium you might just know what I mean!