April292002

Speech-LanguagePathologist.org

We are pleased to announce that Nancy B. Robinson, Ph.D., CCC-SLP will be

joining us tonight, April 29, 2002, for a chat about Cleft Palate. Dr.

Robinson is currently an Associate Professor in the Speech Pathology and

Audiology Program at California State University, Chico. Her interests

center on teamwork and collaboration across allied health and education

disciplines. Dr. Robinson's focus on children with cleft lip and/or palate

developed over many years beginning with graduate school training followed

by clinical experiences with the Easter Seal Society of Oregon. Dr. Robinson

teaches and serves in the areas of Cleft Palate, Augmentative and Alternative

Communication, Language Disorders and Assessment. Her research focuses

on the development of effective teaching practices to promote collaborative

teamwork in serving children and families with disabilities.

Dr. Robinson has provided additional resources and websites pertaining to

cleft lip and palate which may be found below the chat transcript.

<Robin> Hello everyone!!!!!

<Nancy Robinson> Looks like a good group, glad to have you!

<Robin> Excellent! Well lets get started! We are chatting tonight with

Nancy B. Robinson, Ph.D., CCC-SLP about Cleft Palate.

<Robin> Dr. Robinson, could you give us an overview of Cleft Palate?

<Nancy Robinson> Welcome everyone, I am glad to have this chance to meet

you via the internet.

<Nancy Robinson> Well to get started, cleft lip and cleft palate are the

fourth most frequent birth defect in the United States, affecting one out of every

700 newborns. Over 5,000 babies are born each year with these congenital conditions.

<HeatherL> wow

<Nancy Robinson> This is really a condition that is best caught at birth.

<Nancy Robinson> Let me orient you a bit to the type of clefts.

<Nancy Robinson> Clefts are typically found more in boys than in girls

and vary by race and ethnic group a bit.

<Nancy Robinson> I will orient you with landmarks of the face and mouth.

<Nancy Robinson> If you can picture the outer part of the lips to the point just behind your

teeth, that is the primary palate.

<Nancy Robinson> That area is where clefts of the lip and primary palate occur.

<Nancy Robinson> Then go back to the bony hard palate to the soft palate, that is the secondary

palate.

<Nancy Robinson> Clefts can occur anywhere in either or both of those areas.

<Nancy Robinson> Any questions so far?

<SarahJane> none yet!

<Nancy Robinson> Historically, many researchers have developed classification systems for cleft

lip and palate. Currently, the most commonly designated as cleft lip with or without a

cleft palate, CL+/-P or CL/P. Clefts of the palate alone are designated as CPO.

<Nancy Robinson> Typically, CL occurs with cleft of the palate

<Nancy Robinson> When CPO occurs, this is less common and occurs mostly in girls.

<Robin> Why is it that the CPO occurs mostly in girls?

<Nancy Robinson> The findings are that when CPO occurs, that there is a genetic basis.

<Nancy Robinson> So the genetic pattern shows up more in female babies.

<SarahJane> x-linked?

<Nancy Robinson> Yes, that is correct. However, the specific link is not known.

<SarahJane> Alright, what about ethnic and race differences?

<SarahJane> Why does that vary?

<Nancy Robinson> There are over 200 genetic syndromes that are thought to link to clefts.

<Nancy Robinson> There are some racial and ethic differences.

<Nancy Robinson> There are higher levels of clefts among African Americans and Native Americans,

for example.

<Nancy Robinson> Also, among Asian and Filipino populations.

<Nancy Robinson> However, due to immigration and intermarriage, these patterns are not very strong.

<Nancy Robinson> Many geneticists now say that racial and ethnic figures are not accurate.

<Nancy Robinson> While differences are found for race and sex, the occurence of cleft palate

occuring with a cleft lip are more common than either occuring separately.

<Nancy Robinson> The incidence of cleft lip+/-palate and cleft palate alone show that frequency

of clefts at birth generally fall between 1:500 and 1:750.

<Nancy Robinson> The incidence figures of cleft palate alone vary from roughly 1:2500 to 1:3000 births.

<Nancy Robinson> Are there questions about speech and language development?

<Nancy Robinson> Children with clefts are very high risk for speech delays.

<Nancy Robinson> There is about a 50% incidence for articulation problems, even after surgery.

<Nancy Robinson> When a child is born with a cleft of the lip, most often there is an opening in

the palate.

<HeatherL> Is there any type of cleft that affects language delay more than another?

<Nancy Robinson> Good question.

<Nancy Robinson> Ok, think about the size of the cleft.

<Nancy Robinson> When there is an opening in the lip, this is surgically repaired early with

minimal effect on speech.

<Nancy Robinson> However, the secondary palate is where we concentrate.

<Nancy Robinson> DO you all remember what the secondary palate is?

<hw> yup

<HeatherL> yes we do!

<SarahJane> me too!

<Nancy Robinson> Ok, the width of the cleft will mostly affect speech development.

<Nancy Robinson> Some landmarks in the facial, oral, and pharyngeal region are important to

understand the parameters of clefts occuring in children at birth and these include the

nose, lips, bony portion of the alveolar ridge, hard palate and soft palate.

<Nancy Robinson> When the opening is closed, usually surgeons wait until about 12-18 months.

<Nancy Robinson> So speech is developing in infancy with lots of front and back consonants, right?

<SarahJane> 12-18 months... important for language learning!

<Nancy Robinson> As babies vocalize, they may develop compensatory patterns with glottal sounds

that are difficult to change.

<Nancy Robinson> Yes, this is critical and parents often do not know how to best stimulate sounds

when they hear mostly a sort of back sound.

<Nancy Robinson> However, in addition to closing the cleft in the hard palate, the length of the

palate is critical.

<Nancy Robinson> Does any one have an idea why?

<HeatherL> velopharyngeal closure?

<Nancy Robinson> The ability of the soft palate to close the space, yes!

<Nancy Robinson> So when there is a cleft, the velum is often short and the movement impaired.

<Nancy Robinson> Just getting the cleft repaired is only the beginning.

<SarahJane> What is the best way to fix that?

<SarahJane> VY pushback? Pharyngeal flap? Or something else?

<Nancy Robinson> Yes, you are on the right track.

<Nancy Robinson> The process is long and difficult, there are many types of surgeries.

<Nancy Robinson> However, surgeons like to wait until the jaw grows more.

<Nancy Robinson> In young children, the teeth and jaw may collapse inward if too much surgery

is done early.

<Nancy Robinson> A whole team is needed to make decisions.

<Nancy Robinson> Have any of you seen a Cleft Palate Team?

<SarahJane> yup

<HeatherL> you betcha

<hw> Yes, here at UND

<Nancy Robinson> OK, so you know some of the roles and decisions involved.

<Nancy Robinson> Just closing the palate is the beginning, and then the dentist and orthodontist

want to wait for more growth.

<Nancy Robinson> After the upper jaw develops, then the surgeon may want to do more flap or

pushback surgery.

<Robin> Nancy, tell us about the use of obturators?

<Nancy Robinson> Sure, when surgery is not recommended, obdurators are a good option.

<Nancy Robinson> However, they are not often used here in California, at least in my area.

<Nancy Robinson> I worked with a young man who really benefitted from an obturator.

<Nancy Robinson> He had a shortened soft palate and some paralysis.

<Nancy Robinson> The obturator is actually like a retainer with a bulb that fills the opening

between the velum and the pharygeal wall.

<Robin> There must be feeding issues to be addressed with a baby with a cleft lip and palate.

<Nancy Robinson> Feeding is a VERY IMPORTANT issue and special feeding devices, using longer nipples

are used.

<Nancy Robinson> The nurses in most hospitals are really on top of it, giving moms the special

nipples and bottles early.

<Nancy Robinson> However, breast feeding is also possible and can be really beneficial for the

baby with a cleft.

<Nancy Robinson> In some developing countries, it is not uncommon to find infants up to 6-8 months

with an open cleft lip and palate.

<Nancy Robinson> In cases where surgery has not been possible until the family can get to a

medical center, using a special bottle and taping the lip is possible.

<Robin> At what age did you say the cleft is repaired?

<Nancy Robinson> Repair of the lip is typically immediate in the US.

<Nancy Robinson> However, in remote areas, it can be delayed.

<Nancy Robinson> Repair of the palate is getting earlier, and most often by 12-18 months, in

some areas earlier.

<Nancy Robinson> When there is a very wide cleft of the hard palate, the team may wait..

<Nancy Robinson> The reason for this is because of the jaw growth needed.

<Robin> I am just thinking about the feeding issues with that open palate.

<Nancy Robinson> Yes, nasal regurgitation can be a REAL problem in those cases.

<Robin> Yes, that's what I was thinking...how is this avoided?

<Nancy Robinson> However, if you can picture the long feeding nipples that extend over the

cleft, this can help get milk to the right place for swallowing.

<SarahJane> Don't babies gag on the long nipples?

<Nancy Robinson> Yes gagging can be a problem, but it takes trial and error with each baby.

<Nancy Robinson> Moms are extremely creative and patient when it comes to finding the right

spot and position. Being a little more upright can help.

<Nancy Robinson> When children can eat from a spoon, feeding is actually easier, as parents can

place food back on the tongue a bit.

<Robin> What are the typical speech/artic problems associated with cleft palate?

<Nancy Robinson> Some of the early speech problems are these: Early impacts on development of

speech in babies include following:

<Nancy Robinson> Structural differences lead to increased risk of otitis media;

<Nancy Robinson> Limited intra-oral pressure leads to nasalized vowels and consonants;

<Nancy Robinson> Compensatory articulation habits (glottal stop or pharyngeal fricative);

<Nancy Robinson> Major differences from birth in perception and production of speech sounds;

<Nancy Robinson> Delayed speech and language development;

<Nancy Robinson> Phonatory voice disorders;

<Nancy Robinson> Accumulative effect of above referred to as Cleft Palate Speech.

<Nancy Robinson> Remember one principle is that untreated cleft always causes velopharyngeal

incompetence.

<Nancy Robinson> Closure with no remaining fistulae important required early in life to allow

other oral structures and functions to develop as normally as possible (velopharyngeal

function).

<Nancy Robinson> Any questions yet?

<SarahJane> not yet!

<Robin> anyone?

<Nancy Robinson> Ok, well You might want to know the difference between hypernasality and nasal

emission?

<SarahJane> sure

<Nancy Robinson> When you listen to a child with a repaired cleft, say between 3-5 years, you

listen for the quality of his or her speech.

<Nancy Robinson> Hypernasality: Resonance problem involving vowels & vocalic consonants, occurs

when oral and nasal cavities are abnormally coupled. Measured in degrees from mild,

moderate, to severe.

<Nancy Robinson> The term hypernasality is often used to describe the quality we hear.

<Nancy Robinson> However, we cannot hear nasality on most consonants, so the term is misused.

<Nancy Robinson> Nasal Emission: Articulation problem that may be inaudible or audible, occuring

on high pressure consonants.

<Nancy Robinson> The listening we do as SLPs is critical to determine what the surgeon may recommend.

<Nancy Robinson> You will develop your "clinical ear".

<Nancy Robinson> You will find that you can listen for different types of nasality.

<Nancy Robinson> By having a child recite numbers or saying words with non-nasal consonants,

first listen to the vowels.

<Nancy Robinson> If you hear a lot of nasality on the vowels, this is hypernasality.

<Nancy Robinson> Then you can ask the child to repeat pressure sounds like p p p.

<Nancy Robinson> If you see them wrinkle their noses a bit or it sounds more like m m m, this

is nasal emission.

<Nancy Robinson> Hypernasality without nasal emission may mean that the child could improve

with articulation therapy.

<Nancy Robinson> However, if there is consistent nasal emission and consistent hypernasal

quality on vowels, it is important to see what the velum is doing in closure. That is

when the team may recommend some type of study with video or xray.

<SarahJane> What about hyponasality?

<Nancy Robinson> Good, Hyponasality and Denasality: Is based on a resonance problem resulting from

partial or complete blockage of nasal airway. Nasal consonants m, n, "ing" are perceived as

b, d, g but not exactly the same.

<Nancy Robinson> If you hear a lack of nasal resonance, and all nasal sounds are non-nasal,

there is some blockage such as congestion or adenoids.

<Nancy Robinson> You can test for this by asking the child to repeat m m m and see if it sounds

more like b b b.

<Nancy Robinson> The problem is that if the adenoids or tonsils are removed, the result may be

hypernasality!

<SarahJane> oh no

<Nancy Robinson> So, often if a child has a repaired cleft, adenoid or tonsil removal is not

recommended.

<Robin> interesting!

<Nancy Robinson> Medical management of the problem with allergy medication is often preferred.

<Nancy Robinson> This can differ with individuals. We had a child here who had such terrible

colds, the doctor had to remove her tonsils. And the result is that she is far more

nasal. But that could not be helped.

<Robin> Yes, sometimes you can't avoid taking out the tonsils when there is frequent illness.

<Robin> We have been chatting for almost an hour....does anyone have any more specific questions

for Nancy Robinson?

<Nancy Robinson> You may want to know the role of SLPs in the early years?

<Robin> sure!

<Nancy Robinson> Ok, here goes!

<Nancy Robinson> A. Early counseling on effects of cleft palate, early feeding and speech

development impacts:

<Nancy Robinson> b. Receptive and expressive language development, suggestions

<Nancy Robinson> c. Repeated perceptual testing of vp function (multiple measures)

<Nancy Robinson> d. Secondary treatments

<Nancy Robinson> e. Referral for SL therapy at first indicator of need

<Nancy Robinson> f. Managing prevalent SL disorders, hearing problems found

<Nancy Robinson> One area that is not often considered is the need for pragmatic skills.

<Nancy Robinson> Children with CLP are often very shy too, and early intervention can really help!

<Nancy Robinson> With early team management, these kids do very well. Their families need a lot

of support in the process.

<Robin> good point

<Robin> Well, Nancy, you have covered a lot of territory!

<Robin> Thank you so much for sharing all this info with us!

<Nancy Robinson> Thanks Robin, I hope you all get the opportunity to work with CL/P children

and families.

<HeatherL> Yes, thank you very much!

<SarahJane> thank you!

<Nancy Robinson> You are great group, the best next year!

<hw> This has been fun!!

<Robin> Good luck to all of you and congratulations for those of you who will be graduating!!!!!

<SarahJane> thank you

<hw> thank you

<HeatherL> thanks!

<Robin> come back and chat with us in the fall!

<Robin> Nancy, thanks so much again!

<Robin> goodnight all!;)

ADDITIONAL RESOURCES AND WEB SITES:

Resources:

Peterson-Falzone, S.J.; Hardin-Jones, M.A.; Karnell, M.P. (2001). Cleft

Palate Speech, Third Edition. Mosby: St. Louis

Bzoch, K. (1997). Communicative Disorders Related to Cleft Lip and Palate,

Fourth Edition. Pro-Ed: Austin, TX.

Trost-Cardamone, J. Assessing and Treating Craniofacial Speech Disorders.

Videotape produced by InfoLink Video Bulletin.

Witzel, M.A. Compensatory Articulation in Cleft Palate Speech: Assessment

and Treatment. Videotape produced by InfoLink Video Bulletin.

WEBSITES RE: CLP

http://www.cleftpalate-craniofacial.org/acpa/acpafrm.html (ACPA organization

home page)

http://cpcj.allenpress.com/cpcjonline/?request=index-html (online journal)

http://cpcj.allenpress.com/cpcjonline/?request=get-document&issn=1055-6656&volume=037&is
sue=04&page=0348#s4

(specific issue on SL in CLP)

http://www.cleftteam.org/webpages/teamdirectory.htm#thetop (California

teams)

http://transformingfaces.org/ (international organizations to assist persons

in developing countries)

http://wellness.ucdavis.edu/child_health/special_needs/cleft_lip_and_cleft_palate/

(uc davis web site)

http://www.comd.niu.edu/gip/samples.htm (samples of speech requires real

player)

http://www.vcfsef.org/ (velocardial facial syndrome information)

http://www.ncbi.nlm.nih.gov/Omim/searchomim.html (genetic information)

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