Twas the night before surgery

We made it to Dallas, and checked into our hotel room.  Lottie is definitely aware that something big is going to happen.  Sadly, she was very clingy and emotional in the hotel room.  But given some time she was more comfortable and began to play.  We wanted to keep her up as last as possible, since surgery was scheduled for 11:30am the next day and Lottie couldn't eat or drink past 2 am.  We knew she wouldn't understand and how heartbreaking it would be if she signed or requested food.  We were hoping a late hotel room party would equal sleeping in until 10-10:30am.  We also had bags full of distractions- mostly Elmo toys. 

It was a great football night, as our beloved Ravens were playing the Detroit Lions.  And the game didn't disappoint.  We ate room service and cheered on our team.  Lottie really loves to watch football so it was a great distraction and kept our minds off of the surgery.  Our plan unfolded seamlessly, Lottie stayed up until 2 am playing in our bed and eventually dosed off shortly after her last official feeding. 

NAM Device

So we have some exciting news, Dr. Hobar and the Craniofacial Team decided to design and make a NAM Nasoalveolar Molding for Lottie to help prepare her nose and lip ready for surgery. This is not a typical practice for older children, so we are very pleased that Dr. Hobar thinks outside the box and is willing to work extra hard to create this device for Lottie and work with our insurance to prove the medical necessity.  We cannot believe how everything has fallen into place, we are so blessed to have this opportunity to work with such a talented, God driven, and loving team of doctors. Yesterday we were molded for Lottie's NAM, we will be fitted with this device next week.  Read an excerpt from a journal article about the NAM device, we encourage CL/CP parents to research this option for their children and please feel free to contact us with any questions!

"Presurgical infant orthopedics has been employed since the 1950s as an adjunctive neonatal therapy for the correction of cleft lip and palate. Nasoalveolar molding represents a paradigm shift from the traditional methods of presurgical infant orthopedics. One of the problems that the traditional approach failed to address was the deformity of the nasal cartilages in unilateral, as well as bilateral, clefts of the lip and palate and the deficiency of columella tissue in infants with bilateral clefts.

The Nasoalveolar Molding (NAM) technique utilizes wire and acrylic nasal stents attached to an intraoral denture. This appliance is used to mold the nasal cartilages, premaxilla, and alveolar ridges into normal form and position during the neonatal period. In effect, this presurgical management of the cleft infant is intended to reduce severity of the oronasal deformity prior to surgery.

This technique takes advantage of the malleability of immature nasal cartilage and its ability to maintain a permanent correction of its form. In addition, we demonstrate the ability to nonsurgically elongate the columella in bilateral cleft lip and palate through the application of tissue expansion principles. This is performed by gradual elongation of the nasal stents and the application of forces that are applied to the lip and nose. Utilization of the NAM technique has eliminated surgical scars associated with traditional columella reconstruction, has reduced the number and cost of revision surgical procedures, and has become the standard of care in this Cleft Palate Center." Grayson, B.H., & Maull, D., 2005, Nasoalveolar Molding for Infants Born with Clefts of the Lip, Alveolus, and Palate:Semin Plast Surg. Cleft Lip Repair: Trends and Techniques, November; 19(4): 294–301. doi:  10.1055/s-2005-925902

General Feeding Tips for Parents-Cleft Lip/Palate

General Feeding Tips for Parents

By Claire K. Miller, PH.D.

RELAX
Most parents report feeling anxious about learning how to feed a baby with a cleft, but find the problems to be fewer than expected and easy to overcome when using the right type nipple, bottle, and technique.

FEEDING EQUIPMENT & METHODS
A particular method of feeding is usually recommended shortly after birth by a nurse, speech pathologist, or occupational therapist.  Try to use the adapted nipples, bottles, and feeding methods that are recommended, and be sure not to hesitate to call the nurse or speech pathologist if any questions arise about how to use them.

USING APPROPRIATE POSITIONING
Feeding a baby with a cleft palate in an upright position as opposed to the traditional cradle or reclined position will reduce the amount of liquid that can escape up from the nose during feeding.  Try to use a pillow or small foam wedge to support the baby against you in an upright position.

FEEDING REFUSAL
The baby may seem to be refusing to breast feed or bottle feed.  Try to problem solve what might be happening by considering the length of time between feedings.  If the feedings are too close together, the baby may not be hungry enough to be motivated to feed.

Consider the size of the nipple hole (is the baby working too hard to extract the fluid?).  This is a common problem.  Explore using a nipple that either has a faster flow rate or that is flexible enough for assistive squeezing.

If breast feeding, the baby may be overwhelmed with the initial milk let-down during feeding and demonstrate avoidance.  Experiment with hand expressing some milk before trying to breastfeed.

Experiment with the temperature of the formula if bottle feeding.  Although not proven by research, many infants seem to prefer warm formula as opposed to room temperature.

Try to be consistent with the method being used for feeding.  Train others who may be feeding the baby to use the same feeding equipment, and the same type of strategies you use when feeding your baby.  For example, demonstrate how to use assistive squeezing and how often you give the baby breaks for resting or burping during a feeding.

MANAGING AIR INTAKE DURING FEEDING
Babies with clefts will tend to swallow some extra air while feeding.  After intake of every ounce or so, giving the baby a pause from feeding and chance to burp may help to alleviate discomfort associated with excessive air intake.

PERSISTENT ORAL FEEDING PROBLEMS
Most feeding problems can be easily resolved.  If your baby continues to have trouble feeding and you are concerned, consult your pediatrician for a referral to a speech pathologist or occupational therapist experienced with the special feeding issues associated with cleft lip/palate or other craniofacial anomalies.

Information cited : Kummer, A. 2008, Cleft Palate and Craniofacial anomolies:Effects on speech and resonance,  Delmar: Clifton Park, New York.

A dozen cleft bottles

The adoption world is a wonderful community! We all understand what adoption means and together we share our stories, advice and support.

A few months ago a fellow AP (Adoptive Parent) Mama sent an e-mail about donating some Cleft Mead Johnson bottles, and I was able to receive 12 wonderful cleft bottles for my sweet Charlotte free of charge.  Such a generous and kind act!

Even better..I was able to send 6 of these cleft bottles to other fellow Cleft Mamas who are traveling to China soon to be united with their babies.  

Want to learn more about Cleft Bottles: 

Tips for Stimulating Your Baby's Early Speech Sounds

By Adriane L. Baylis, PhD, CCC-SLP and Anna K. Thurmes, MA, CCC-SLP

Before your child's palate repair it will be difficult for them to learn to say sounds that require air (pressure) to build up in their mouth, like "p", "b" and "d".  The main goal before the palate repair is to help your baby learn to speak by using their lips and tongue to create sounds.  We want to encourage the baby to use sounds that they can be most successful at, such as those that do not require their palate to work yet, such as "m", "n", "w", "y" and "h".  Most babies with cleft palate do not say sounds like "p" or "b" before their palate surgery, but we still want them to hear those sounds frequently too, as they are still learning about those sounds and will eventually begin them after their palate surgery.

We do not want to encourage the baby to only learn to use their throat to make sounds (such as grunts or similar sound called "glottal stops").  We hope to avoid having the baby use too many rough sounds like grunts, truck noises, or gruff animal noises.  It's perfectly normal for all babies to use some throat sounds and noises, especially at early ages;however, some children with cleft palate may get into a habit of using these sounds too much as they get older, and this can make it harder for them to learn new sounds.  If you hear your child making a lot of these grunts or throat sounds, we recommend that you just ignore it and instead, say the correct pronunciation or a different sound back at your child.  For example, if your child says "uh" for "truck", you can say "yes truck" "beep beep".  Or, if your child says "aeh-ee" for "daddy", you should just say "yes daddy" back at them, instead of mimicking the incorrect production.  Whenever your child speaks, you should praise them for using their words, or even more specifically, their lips or tongue to continue to encourage normal speech development.

At the bottom of this post. there are a few examples of some words you can emphasize and practice with your baby.  When you say these, feel free to exaggerate how you use your lips or tongue to start the word.  Keep in mind:

• Notice that the target sounds are all at the beginning of the words.  That's because it's common for infants and toddlers to make mistakes ot even leave of the later sounds of words when they are first learning to talk.  In addition, by working on the first sounds of words, research suggests that this might help your child avoid continued use of those throaty sounds (the glottal stops) that they might have used in the past.
• Try to encourage these words during your child's daily routine (For example, you can practice "bubble" during bath time, or "yummy" during meals).
• It's perfectly normal for a bay to not imitate your words and sounds every time, but most babies will repeat sounds back at east occasionally, and more often as they approach 12-15 months of age.
• After the palate repair surgery, you should shift to increased practice of the "p", "b", "d" and "t" words on this list and give your child more specific praises (e.g. for "p" you can say "good job using your lips").

Practice Words:
M: More, Mama,/Mom, Me, Mine, Moo, Meow
N: No-No, Nana, Num-Num, Nose, Night-Night, Neigh
H: Hi, Hop, Hot, Happy, Hug, Here, Het, Hat, Head
W: Whoa, Wow, Whee, Want, Wawa/water, Whoops, Wash
Y: Yeah, Yea, Yes, Yipee, Yummy/YumYum, You
B: Bye, Ball, Boo, Bowl, Boo-Boo, Bottle, Bib, Bite, Beep, Bubble, Book, Baa-Baa, Bath
P: Pop, Pooh, Papa, Peek-a-Boo, Puppy
D: dadda, Done, Down, Diaper, Duck
T: Two, Toy, Teeth

Here are some ideas for how to work these words into your child's daily routine.

• Bubbles: When playing with bubbles you can emphasize the "p" and "b" in the words "bubble" and "pop".  Have your child request more by saying "mmmm" or "more"
• Reading books: When reading books, pick ones with just a few pictures on the page and point out the pictures with "p", "b", "m" and "n" and model the sounds and words for your baby.
• Snack time: Give one piece or part of the snack at a time to create opportunities for your child to request "more".  during snack time, try to make situations your child has to gesture or point, sign or attempt to say the word "more" or "please".  Then you say "yummy" when they take a bite too:  Remember to model the words for your child and reward even the simplest attempts that make towards the goal.
• Blocks: This is a great activity to practice "p" and "b".  remember to not give out all the blocks at one time, and instead have your child request them one at a time by attempting to gesture/point, sign or say "more" or "please".  You can model words such as "blocks, blue, build, pile, please, put down, up and boom" and so forth during playtime.  hold the block by your mouth when you model the words so your child looks at your face when you make the sounds.
• Farm animals: modeling animal sounds like "baa, moo, meow, neigh, and woof" while playing with the animals is a great way to keep your child interested in the activity and to encourage imitation.
• Bath and bed time:  This is a good time to emphasize words like "bed, bath, brush, nap, sleep, pillow, blanket, papa, mama, bubble".

What is a Cleft?

A cleft is an abnormal opening or a fissure in an anatomical structure that is normally closed. A cleft lip is the result or failure of the parts of the lip to come together early in the life of the fetus.  Cleft palate occurs when the parts of the roof of the mouth do not fuse normally during fetal development, leaving a large opening between the oral cavity and the nasal cavity.  Clefts can vary in length and in width, depending on the degree of fusion of the individual parts.  It is important to not that when there is a cleft lip and/or palate, the structures are all present but have not fused together normally.  In addition, the structures may be hypoplastic or underdeveloped, in their formation.

A cleft of the lip and/or palate is a congenital malformation that occurs in utero during the first trimester of pregnancy.  Because a cleft is due to a disruption in embryological development, clefts typically follow the normal fusion lines.  The interference in embryological development of the mid face and oral cavity is often associated with malformations of the nose, eyes, and other facial structures as well.  When other congenital anomalies occur along with the cleft lip and palate, they usually have a genetic etiology and are part of a multiple malformation syndrome.

A cleft lip presents with more serious cosmetic concerns than cleft palate, but a cleft palate presents with more serious functional problems, particularly problems with speech.  Individuals born with both cleft lip and cleft palate are at risk for problems with aesthetics, feeding, speech, resonance, and hearing.  Although there are many commonalities in the appearance of the basic clefting conditions, clefts also give rise to unique anatomical and functional deviations.  These deviations are due to variations in etiology, but are also due to various forms of treatment ti which the patient has been subjected.  Therefore, the severity in aesthetics and function ranges from barely noticeable to severely affected and malformed.

Information cited : Kummer, A. 2008, Cleft Palate and Craniofacial anomolies:Effects on speech and resonance, Delmar: Clifton Park, New York.

Cleft Palate Foundation Publications

Reprinted with  Permission from the Cleft Palate Foundation-available at http://cleftline.org

Fact Sheets:

• For Parents of newborn Babies with Cleft Lip/Palate
• Answers to Common Questions about Scars
• Bonegrafting the Cleft Maxilla
• Choosing a Cleft Palate or Craniofacial Team
• Crouzon Syndrome
• Dealing with Your Insurance Company/ HMO
• Dental Care for a Child with Cleft Lip and Palate
• Financial Assistance
• Letter to Teacher
• Letter to the Parent of a Chil with Cleft
• Moebius Syndrome
• Pierre Robin Syndrome
• Preparing your child for Social Situations
• Positional Plagiocephaly
• Replacing  a missing tooth
• Selected bibiography for Parents
• Speech Development
• Submucous Clefts
• Treacher Collins
• Treatment for Adults

Booklet Summaries:

• Cleft Lip and Palate: The First Four Years
• Cleft Lip and Palate: The School Age years
• As you Get Older: Information for Teens Born with Cleft Lip and Palate
• Cleft Lip and Palate: The adult Patient
• Feeding an Infant with a Cleft
• Cleft Palate and Hearing Loss
• The Genetics of Cleft Lip and Palate:Information for families
• Hemangiomas and Vascular Malformations
• Managing Speech Problems: Physical Treatment of Velopharyngeal Dysfunction
• Audiovisual and Supplemental Resource Catalog
• Parameters for Evaluation and Treatment of Patients with Cleft Lip/Palate or Other Craniofacial Anomolies: Summary of Recommendations, American Cleft Palate-Craniofacial Association, May 1993 Rev. 2000

Resources for Cleft Lip/Palate Information/ Support

Resources for information regarding cleft lip and palate and craniofacial anomalies are available from a variety of sources.  The following is a list of some of the national organizations that can be helpful in providing information and resources.  This list is not inclusive by any means.  In fact, there are many local and state organizations that can provide information and support.  Information on the other organizations and resources can be found on may of the web sites listed.

AboutFace is an organization of individuals and families who have experienced the challenges of facial differences.  This organization provides emotional support, information services, and educational programs about living with  facial differences.  About Face focuses on syndromes and conditions, psychosocial issues, public awareness, and integration issues.  It provides a variety of resources, including newsletters, videotapes, and publications.  There is a national chapter network for local access and networking.

For further information:
Phone(800) 665-FACE (800)-665-3223 or (416)-597-2229
Fax: (416)597-8494
E-mail info@aboutfaceinternational.org
Website: http://www.aboutfaceinternational.org
Address: 123 Edward Street, Suite 1003
Toronto, ON, Canada, M5G 1E2

The American Cleft Palate-Craniofacial Association (ACPA) is a professional organization, founded in 1943, which includes all disciplines involved in the care and treatment of the cleft palate and craniofacial anomalies.  members are from the United States and from over 40 countries all over the world.  Membership is open to individuals who are qualified to treat or conduct research ion the areas of cleft lip, cleft palate, and other craniofacial anomalies.  ACPA is dedicated to the study and treatment of all aspects of craniofacial anomalies, including cleft lip, and palate.  The organization has worked toward establishing standards of care for patients with craniofacial anomalies.  Clinical and research information is shared through its quarterly Cleft Palate-Craniofacial Journal.  Annual professional meetings are held at various locations around the country for the purpose of sharing and exchanging clinical information and the latest research findings. 

For further information
Phone: (919)933-9044
E-mail: info @acpa-cpf.org
Address: 1504 East Franklin Street, Suite 102
Chapel Hill, NC 27514-2820

The Cleft Palate Foundation (CPF) is a group that is associated with the American Cleft Palate-Craniofacial Association.  The CPF has the mission of serving as a resource to families and professionals around the country.  Services include a 24 hour toll free phone number (CLEFT-LINE) that is available to both families and professionals who are seeking information about the evaluation or treatment of individuals with cleft lip. cleft palate, or other craniofacial birth defects.  In addition, the CPF provides consumers with booklets on all aspects of the cleft lip and palate (available in English and Spanish), craniofacial anomalies, and related syndromes.  They provide a bibliography from parents of children with cleft lip/palate and a catalog of informational videocassettes.  they can refer families to local and national support groups.  Finally, the CPF provides consumers with a list of guidelines for choosing a medical team for cleft palate and craniofacial anomaly teams in the patent's area.

For further information:
Phone (919) 933-9044
Fax: (919) 933-9604
E-mail info@cleftline.org
Website: http://www.cleftline.org
Address: 1504 East Franklin Street, Suite 102
Chapel Hill, NC 27514-2820

Children's Craniofacial Association (CCA) offers assistance with doctor referrals and non medical assistance.  There are annual family retreats and educational programs.  The organization has publications about various craniofacial syndromes.

For further information:
Phone: (800) 535-3643 or (214)570-9099
Fax: (214) 570-8811
E-mail contact CCA@ccakids.com
Website: 13140Coit Road, Suite 307
Dallas, TX 75240

FACES: The National Craniofacial Association: is a nonprofit organization that serves children and adults with craniofacial disorders by acting as a clearinghouse of information on specific disorders and available resources, providing networking, opportunities with other families, publishing a quarterly newsletter, and providing financial assistance to families who cannot afford to travel away from home to a specialized craniofacial medical center.

For further information:
Phone (800) 3FACES3 (800)-332-2373
E-mail: faces@faces-cranio.org
Address P.O. Box 11082
Chattanooga, TN 37401

Let's Face It: is an information and support network for people with facial differences, their families, and professionals.  Once a year, this organization publishes an extensive manual of organizations and resources for individuals with facial differences/  To be places on their mailing list, just send an e-mail address.

For Further information:
University of Michigan
School of Dentistry/Dentistry Library
1011 N. University
Ann Arbor, MI 48109-1078

Parents Helping Parents (PHP) is a parent-directed family resource center serving children with special needs, their families, and the professionals who serve them.. This organization provides parent and professional training on how to begin and maintain a parent support network.  Publications are available for training and information. 

For further information:
Phone: (408) 727-5775
Fax: (408) 727- 0182
E-mail: info@php.com
Website: http://www.php.com
Address: 2041 Olcott Street
Santa Clara, CA 95054

Smile Train has a free online library and links for articles form around the world on the cause and treatment of clefts.  They also have informational booklets for families. 

For further information:
Phone: (877) KID-SMILE or (212)689-9199
E-mailL info@smiletrain.org
Website: htpp://www.smiletrain.org
Address: 245 Fifth Avenue Suite 2201
New York, NY 10016

Wide Smiles is a nonprofit organization that is supported through contributions.  Is purpose is to provide resources for individuals and family members with a history of cleft lip and plate.

For further information:
Phone: (209) 942-2812
E-mail josmiles@yahoo.com
Website: http://www.widesmiles.org
Address: P.O. Box 5153
Stockton, CA 95205-0153

Information cited : Kummer, A. 2008, Cleft Palate and Craniofacial anomolies:Effects on speech and resonance, Delmar: Clifton Park, New York.

The effects of Cleft Lip/Palate on Communication

A history of Cleft lip or palate can affect the child's ability to develop verbal communication skills.  The following aspects of vernal communication may be defective.

Articulation(Speech)-the physical production of sounds to form spoken words

Language-the message conveyed back and forth in talking.  This includes the ability to understand the speech of others (receptive language) and the ability to express thoughts through words and sentences (expressive language).

Voice-the sound that results from the vibration of the vocal cords (phonation).

Resonance-the vibration of voiced sound in the oral cavity (mouth, and nasal cavity (nose).

Dental Abnormalities

If the cleft extended into the gum ridge, dental development may be affected, causing the following:
-Missing teeth in the area of the cleft
-Extra teeth
-Malocclusion(poor closure of the top and bottom jaws)

Dental abnormalities may cause speech errors as follows:
-A lisp type of distortion on sibilant sounds (/s/, /z/, /sh/, /ch/, /j/)
-Difficulty producing teeth to lip sounds (/p/, /b/, /m/)
-Difficulty producing teeth to lip sounds (/f/, /v/)
-Difficulty producing tongue-tip sounds (/t/, /d/, /n/, /l/)

These distortions can usually be corrected with a combination of dental and orthodontic treatment, and speech therapy.


Hearing Loss

The Eustachian tube connects the middle ear and the back of the throat.  It opens with swallowing.  This allows fluids to drain out of the middle ear and equalizes air pressure in the ear with the environment.  Children with a history of cleft palate often have chronic ear infections (Otitis media) because that muscle in the soft palate that is responsible for opening the Eustachian tube does not function well.  As a result, negative pressure and fluid build up in the middle ear, causing ear infections ans a conduction hearing loss.  A conductive hearing loss can affect the child's ability to develop language and even speech skills.
To avoid middle ear problems, pressure equalizing (PE) tubes are often inserted in the eardrum at an early age.  This helps to prevent fluids from building up in the ear that cause infection and hearing loss.


Velopharyngeal Dysfunction (VPD)

Also known as Velopharyngeal Insufficiency or Incompetence-VPI)
In order to close off the nose from the mouth during speech, several structures come together to achieve "velopharyngeal closure" These includes the following:
-Velum-soft palate
-Lateral pharyngeal walla-side walls of the throat
-Posterior pharyngeal walls-the back wall of the throat.

When the velopharyngeal valve closes, the speaker is able to build up air pressure and sound in the mouth to produce carious consonant sounds and vowel sounds.  Velopharyngeal closure also occurs during other activities, such as swallowing, gagging, vomiting, sucking, blowing, and whistling.
After a cleft palate repair, the velum (soft palate) may still be too short or may not move well enough to reach the posterior pharyngeal wall (back of throat).  This results in velopharyngeal dysfunction (VPD) which causes problems with speech.

Effects of Velopharyngeal Dysfunction on Speech

Velopharyngeak dysfunction can cause the following speech characteristics"
-Hypernasality (too much sound in the nose during speech)
-Nasal air emission during consonant production
-Weak or omitted consonants due to inadequate air pressure in the mouth
-Compensatory articulation productions (speech sounds produced in a different way)

Treatment of Velopharyngeal Dysfunction (VPD)

Treatment of VPD usually includes surgical intervention and speech therapy.  Prosthetic devices can also be used on a temporary or permanent basis in some cases.

Information cited : Kummer, A. 2008, Cleft Palate and Craniofacial anomolies:Effects on speech and resonance,  Delmar: Clifton Park, New York.