• 1. Why does Cleft lip and palate occur?



Cleft lip and palate occur when tissues in the baby's face and mouth don't fuse properly when the child is developing in the mother's wound (3 to 4 weeks of pregancy). Reason behind this is mostly unknown. Some drugs like phenytoin, retenoids, steroids and life style habits like active anfd passive smokers, alcohol consumption during pregency are known to be cause.



• 2. Is Cleft lip and palate hereditary?



Yes. Cleft lip and palate can be hereditary. However, no single gene has been identified as universal culprit. A parent affected with cleft lip/palate has a 3-5% chance of having an affected child.



• 3. How common is Cleft lip and cleft palate?



In India, cleft lip and palate is estimated to be present in 1.4 children for every 1000 live births.There is approximately 35,000 new cleft lip and palate patients added every year to the Indian population.



• 4. Can cleft lip and palate be detected during antenatal scans? If so, is this a reason for termination?

Children with cleft lip and palate can be detected by ultrasound from the 13th week of pregnancy. The detection rate varies widely between 16-93%. Usually, the foetus is screened for the presence of abnormalities which are not compatible with living. Even though cleft lip and palate can be detected at pregnancy, this condition is not a good reason for the termination of pregnancy as they can be treated well and it is not a condition that is risky for life. Parents can get counselled by the pediatriciatian or surgeons involved in the care cleft patients



• 5. Can children with cleft lip and palate be vaccinated?



Yes. Children with cleft lip and palate should be vaccinated just like other children.

• 6. If a parent has a child with cleft lip and palate, what is the chance that the next child will also have a cleft lip and palate?



If a child or a parent has a cleft lip/palate, there is a 4% risk to the subsequent children. If 2 children have cleft lip/palate, the risk increases to 9%. If one parent and one child have cleft lip/palate, then the risk increases to 17%.



• 7. Do children with cleft lips have difficulty in feeding? If so, how should the mothers feed the children?



The child is unable to create a negative pressure while sucking as there is a cleft. In addition, the child swallows a lot of air while drinking milk. Hence the stomach gets bloated, and they feel full early and don’t drink milk much. They get hungry soon and they cry again. We recommend feeding the child in an upright position or in reclining position with the head up using a “Paladai” or a clean spoon. Soon after feeding the child , we recommend tapping the child’s back gently so as to encourage burping and remove the excessive air in the stomach.



• 8. Do children with cleft lip and palate need any change in diet?



Children with cleft can be a normal diet. At six months of age child can be started on pureed foods. Once the palate is repaired child can start eating like every other child.



• 9. Can children with cleft lip and palate attend normal schools?



Children with cleft lip and palate should attend normal schools just like other children. It's important to remember that many children with cleft lip and palate do very well at school, without any additional support.

• 1. Can surgeries for cleft lip and palate be done in the same sitting? If not how many surgeries do children with cleft lip and palate need and when?



Surgeries for cleft lip and palate are usually done in separate sittings. The timeline is as follows

Nasoalveolar moulding	: Within 1 month after birth
Cleft lip repair	: 4 to 6 months
Cleft Palate	: 9 to 18 months (6 months after cleft lip repair)
Surgery for speech	: 4 to 6 years
Surgery for closing cleft in the gums	: 7 to 11 years(Alveolar bone grafting)
Jaw Surgery (Orthognathic Surgery)	: 18 years
Definitive Rhinoplasty	: 18 years



• 2. When is surgery done for cleft lip?



Surgery for the cleft lip is done when the baby is 6 months old with an adequate weight of 4.5 to 5 kgs.



• 3. How is surgery done for the cleft lip?



Surgery for cleft lip is done under general anaesthesia. It usually takes about 1-2 hrs. In this the tissues around the cleft of lip are released and brought together to create a near normal lip both in terms of function and appearance.



• 4. How are patients with cleft lip managed post-operatively?



Child needs to stay in hospital for minimum of 3 days. It can vary according to child progress. Child can start fluids within 3 hours of surgery with spoon or paaladai and continue same for another month. Sutures usually used are absorbable hence not need to removed. Scar massage is initiated within 2 weeks after surgery.



• 5. When is surgery done for cleft palate?



The surgery for the cleft palate is done between 9 months to 18 months. It is generally done 6 months after the surgery for cleft lip.



• 6. Why should surgery be done for cleft palate?



Repair of the cleft in the palate is essential for good speech and to prevent the food in the mouth regurgitating into the nose.



• 7. How is the surgery done for cleft palate?



Surgery for the cleft palate is done under general anaesthesia. The tissue from the side of cleft is released, tissues in the palate moved around and sutured together in layers to seperate the nose from mouth. Raw areas will be there on the size and hence proper oral hygiene should be maintained.



• 8. How are patients with cleft palate managed post-operatively?



Child requires a minimum of 5 days stay in the hospital and this can vary depending on the child's and parents comfort regarding feeding. Child will be started on oral clear fluids within 3 hours of surgery. This will be given with spoon or paaladai. It will continue for a month. Strictly no sticky foods should be given. This is to avoid a break in suture line. There is no need for suture removal as suture used are absorbable.



• 9. What is Palatal fistula?



Palatal fistula is an abnormal communication between the nasal and oral cavity after cleft palate repair.



• 10. How common is palatal fistula?



The incidence of palatal fistula ranges between 0-76%.



• 11. How is the surgery for palatal fistula done?



The surgery for palatal fistula is done by mobilising the tissue from the rest of the palate or by using tissue from the tongue to close the defect in the palate.



• 12. How is surgery for palatal fistula managed post operatively?



Number of days of stay in hospital	: 5 days
Patient can drink water	: 3 hrs after surgery
Patient can eat normal food	: Semisolid food from next day and normal food in 3 weeks
Suture removal time	: dissolvable sutures are used and hence they need not be removed.



• 13. What is the post operative follow-up for surgery for velopharyngeal insufficiency (VPI)?



We would start speech therapy within 3 weeks. Regular speech therapy is the key for improvement and nasal endoscopy for monitoring.
Facts at a glance

Number of days of stay in hospital	: 5 - 6 days
Patient can drink water	: 2 hours after surgery without introducing any object into the mouth
Patient can eat normal food	: 3 weeks
Suture removal time	: absorbable sutures would be used for surgery and hence removal would not be needed



• 14. What is an alveolar cleft?



Alveolar Cleft is a discontinuity in the upper jaw dental arch due to the lack of fusion of the upper jaw bone.



• 15. Why should the alveolar cleft be closed?



Alveolar cleft is needed to maintain the bony continuity and facilitate tooth eruption. An intact upper jaw should be present if further procedures need to be done to change the position.



• 16. How and when is the surgery done for closure of the alveolar cleft?



The surgery for alveolar cleft is done prior to the eruption of the permanent canine tooth. The approximate age at which the surgery is done would be between 8 to 10years of age. Flaps are raised from the gums in the upper jaw near the cleft. Bone is harvested from the pelvic bone prominence on one side and packed into the cleft area within the flaps raised to recreate the dental arch.



• 17. How is the surgery for alveolar cleft managed post-operatively?



The patient is maintained on liquid diet for 2 days and is then started on semisolid diet. Upto 3 weeks. We encourage the patient to have good oral hygiene by brushing the mouth twice daily and using mouth washes after each meal.
Facts at a glance

Number of days of stay in hospital	: 3 - 4 days
Patient can drink water	: 2 hours after surgery Started on soft mashed solids after 48 hours and advised not to chew but directly swallow.
Patient can eat normal food	: 3 weeks
Suture removal time	: absorbable sutures



• 18. How important is a treatment with a dentist after alveolar cleft closure?



Follow up treatment with an orthodontist is important in bringing back the erupting tooth to normal alignment of the dental arch.



• 19. When and why is the underdevelopment of the upper jaw treated?



Due to the treatment of the cleft palate, the upper jaw may not develop well corresponding to the lower jaw. Hence there can be a flattening of the midface. Correction of the position of the upper jaw would also mean that the position of the teeth should be adjusted by the dentist so that the teeth would meet each other well after correction of the upper jaw. It is advisable to correct the underdevelopment of upper jaw after the full growth of the upper jaw is completed. Hence correction of the upper jaw is done after 16 years of age.



• 20. How is the surgery done for correcting the underdevelopment of the upper jaw?



Before surgery can be done to advance the upper jaw, the final plan is planned along with the dentist because after the operation, the teeth in both the jaws should meet well. After planning with certain plaster models, the dentist would apply dental appliances to correct the alignment of the teeth so that it would suit the future dental alignment. Surgery is then done whereby the upper jaw is cut within the mouth and is then advanced forward as planned earlier. In some cases, the lower jaw may also be cut within the mouth and then brought back to maintain the right alignment of the face. There will not be any sutures over the face. For further contour deformities on the face, fat can be harvested from the thighs or buttocks and injected into the midface.



• 21. What is the post operative follow-up for surgery for correction of the underdevelopment of the upper jaw?



The upper and lower jaws of the patient will be kept together with rubber bands so that there wont be inadvertent mouth opening. This is done to prevent moving of the jaw bones so that the jaw bones can settle in the new place. These bands will be removed in 3 weeks an dthen the patient is slowly asked to open and close the mouth. Patient will be on liquid diet for one month followed by mashed soft solid food for another month. In 3 months, the patient can eat normal food.
Facts at a glance

Number of days of stay in hospital	: 3 - 4 days
Patient can drink water	: after 4 hours of surgery.
Patient can eat normal food	: 3 months after surgery
Suture removal time	: absorbable intra-oral sutures will be used and hence need not be removed.



• 22. How and when is the nose deformity corrected?



Nasal deformity can be corrected initially while operating for cleft lip correction, this is called as primary rhinoplasty. It is advisable to correct the nasal deformity after the full growth of the upper jaw and the nasal complex which takes about 16 years of age. If the correction of the upper jaw is planed, then the correction of the nose is done after that



• 23. How is the surgery done for correcting the nasal deformity?



Each nasal deformity is thoroughly evaluated before surgery by taking photos and analysing the photos. We discuss in detail with the patient and the attenders, on what we would correct after the operation and what one can expect after the operation. The surgery is done under general anaesthesia. The only place where the incision for the nose would be visible is in the undersurface of the nose between the two external nostrils. Alterations in the cartilage and bones of the nose is done. Extra cartilage is usually required to build the nose and this is taken either from the septum of the nose or from a cartilage near the ribs in the chest. The surgery would take around 2 to 4 hours.



• 24. How is the surgery for correction of the nasal deformity managed post-operatively?



Nasal packs are kept inside both nostrils at the end of the surgery to avoid any nasal bleeding. These nasal packs are removed at the end of 2 days. A splint is applied on the dorsum of the nose to give protection to the nose. This splint is removed in 10 days. The patient is advised to take liquids on the day of surgery. Semisolid diet is started the next day and gradually the patient is asked to take normal diet. Swelling and bruising of the face is expected for the first few weeks after surgery which will resolve within a few weeks.
Facts at a glance

Number of days of stay in hospital	: 3 - 4 days
Patient can drink water	: 4 hours after surgery.
Patient can eat normal food	: 3 - 4 days after surgery
Suture removal time	: Need removal between 5 to 7 days after surgery.

Speech language therapy for children with cleft lip and palate

India has an estimated population of 1.1 billion. This yields an estimated 24.5 million births per year and the birth prevalence of clefts is somewhere in between 27,000 and 33,000 clefts per year.

After proper surgical repair of the palate and lip, 80% of children with cleft lip and palate can develop normal speech and language. Parents play a huge role in their child’s speech development. After palate repair it is crucial to follow up regularly with the Speech Language Pathologist (SLP) until they develop normal speech, or speech defects are detected and surgically treated if necessary. Children with cleft lip and palate develop speech and language a bit more slowly than other children. These children are also at an increased risk for language disorders.

The effect of cleft lip and palate on speech is very variable and not always related to the type or extent of the original problem. Generally, it is noted that a cleft lip without a cleft palate will hardly influence speech. Sometimes, if the cleft lip is bilateral and the gum is also affected there may be minor speech difficulties.

Once the palate has been repaired at around six months, few children go on to develop clear speech without any help. However, some may have trouble developing speech which may require therapy from a Speech Language Pathologist or in some cases, further palatal surgery. There are many causes of speech difficulties in children with a repaired cleft palate, some related to structure and some related to function of the palate, others to recurrent hearing problems or to the alignment of teeth or jaws.

During speech, the palate plays an important role in sealing off the oral cavity from the nasal cavity so that sufficient air flows through the oral cavity to produce vowels and consonants. If the palate is not able to do so, the speech will sound nasalized resulting in hyper nasal speech.

As per protocol, there will be pre-operative assessments carried out by the Speech Language Pathologist. It also comprises of a post-operative assessment. Here, the Speech Therapist advises the parents on how to help the child begin the speech sounds production. The parents are asked to bring the child for periodical assessments to monitor their progress.

The speech assessment carried out will be primarily at the following junctures of the program,

1. Initial assessment (to register the patient in the speech program)
2. Intermediate assessment (to resume therapy after a break)
3. Pre- VPD (velopharyngeal dysfunction) surgery assessment
4. Post- VPD surgery assessment (6-12 months post-operative)
5. Final assessment

When your child is around eighteen months of age, arrangements will be made for a more formal assessment of their speech and language development by the Speech Language Pathologist (SLP) from cleft team. This will be undertaken again at least annually until they are five or six years old depending on their improvement.

The assessments carried out by the Speech Therapist includes,

1. Perceptual assessment
2. Rating of resonance (Hypernasality, Hyponasality and Cul-de-sac resonance)
3. Rating of nasal air emission
4. Speech sound assessment (using the Articulation Test of their particular language)
5. Rating speech intelligibility (The listeners ability to understand the child’s speech)
6. Intraoral assessment (Peripheral oral structures and its function)
7. Speech sample audio/video recording
8. Instrumental assessment (nasopharyngoscopy if required)

Age	Vocabulary and sentence development
12-18 months	First words
2 years	2 word sentences
3 years	3 - 4 word sentences, 400-900 word vocabulary
5 years	5 - 6 word sentences, 1500 - 2500 word vocabulary

The SLP will carry out these assessments and will provide a counselling session for the parents to understand their child and the kind of support they must be given at home. If the child requires regular speech therapy, it will be advised by the SLP.

The treatment to help children with cleft lip and palate speech mainly focuses on establishing correct articulation using several articulation therapy techniques, ensure there is good oral pressure during sound production. In case your child is diagnosed to have language delay along with speech issues, the treatment is also focused on language aspects.

Some children continue to have difficulty with speech production and further surgery may be necessary (possibly pharyngoplasty) if the palate is not closing the nose adequately. Before the decision are made about the need of further surgery, your child’s speech will be carefully assessed with the help of some special test instrument (Nasoendoscopy) which involves putting a tiny telescope into the nose to look at the palate during surgery.

The process of overcoming a speech or language disorder can take some time and effort so it is important that all family members be patient and understanding. Every cleft-affected young child should see a pathologist at least once per year for screening.

Nasoalveolar moulding (NAM) is a nonsurgical way to reshape the gums, lip and nostrils with a plastic plate and tapes before cleft lip and palate surgery. .NAM helps to maintain the size of cleft in lip and palate and it mainly helps to attain the contour of nose .Some infants are more tolerant to feeds as the plastic plate avoids regurgitation and aids in weight gain . Pre-surgery molding improves the results of cleft lip and palate surgeries and future rhinoplasty correction .

Concept behind NAM :

Soon after the birth of the infant there are high levels of maternal estrogen in the fetal circulation which triggers an increase in the hyaluronic acid. Hyaluronic acid alters the cartilage, ligament and connective tissue elasticity by breaking down intercellular matrix .This leads to growth in the preferred site there by allowing a reduction in cleft size.Levels of estrogen start dropping at 6 weeks of age. Hence NAM procedure is better to be started at the earliest ,even day1 !!

How long should NAM be worn ?

NAM plate should be worn continuously through out the day and it should be removed once a day for cleaning purpose .NAM is preferred to be used till 5 months of age to maintain the contour .Child will need to be seen at regular intervals to check if growth is happening in desired place and minor corrections in plate might be needed .

Is this procedure painful for the child ?

Child will actually feel more comfortable wearing the appliance as the child can swallow easily without regurgitation .The parents will be counselled on how to handle the baby and the appliance and be guided through each step.

How to feed with NAM ?

Feeding with NAM plate insitu is easy for the infant as chances of leak through the nose is reduced. Usually a feeding bottle or paaladai is advised .some parents are comfortable with habermann bottle too which has a long nipple so that it reaches the throat directly .Some mothers prefer direct breast feeding too but this is entirely dependant on the infant deformity .

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Nasoalveolar moulding