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  1. 1. Cleft FAQ
  2. 2. CONTENTS <ul><li>What is cleft lip and palate? </li></ul><ul><li>What causes cleft lip and/or palate? </li></ul><ul><li>How common is cleft lip and/or palate? </li></ul><ul><li>What is the treatment for cleft lip and/or palate? </li></ul><ul><li>What other operations may be necessary? </li></ul><ul><li>What other kinds of problems could my child with cleft lip and/or palate have? </li></ul><ul><li>Will this happen to children I have in the future? </li></ul><ul><li>Our Treatment Approach in AIMS Kochi </li></ul><ul><li>How to Contact us </li></ul>
  3. 3. What is cleft lip and palate? <ul><li>Cleft lip (split of the upper lip) and </li></ul><ul><li>Cleft palate (split of the roof of the mouth) </li></ul><ul><li>are the most common types of congenital (birth) defects. Because the lip and the palate develop separately, it is possible for the child to have a cleft lip , a cleft palate , or both cleft lip and cleft palate </li></ul>Cleft means “split” or “separation”. During early pregnancy separate areas of the face develop individually and then join together. If some parts do not join properly the result is a cleft, the type and severity of which can vary
  4. 4. Cleft lip: <ul><li>A cleft lip is a condition that creates an opening in the upper lip between the mouth and nose. It looks as though there is a split in the lip. It can range from a slight notch in the coloured portion of the lip to complete separation in one or both sides of the lip extending up and into the nose. A cleft on one side is called a unilateral cleft lip . If a cleft occurs on both sides it is called a bilateral cleft lip . A cleft in the gum (alveolus)may occur in association with a cleft lip. This may range from a small notch in the gum to a complete division of the gum into separate parts. </li></ul>
  5. 5. Cleft palate: <ul><li>A cleft palate occurs when the roof of the mouth has not joined completely. Cleft palates can be unilateral or bilateral . The back of the palate (towards the throat) is called the soft palate and the front (towards the mouth) is known as the hard palate. If you feel the inside of your mouth with your tongue, you will be able to notice the difference between the soft and the hard palate. </li></ul><ul><li>A cleft palate can range from just an opening at the back of the soft palate to a nearly complete separation of the roof of the mouth (soft and hard palate). Sometimes a baby with a cleft palate may have a small lower jaw (or mandible), and a few babies with this combination may have difficulties with breathing easily. This condition may be called Pierre Robin Sequence. </li></ul>
  6. 6. What causes cleft lip and/or palate? <ul><li>. The exact cause of the condition is unknown. The majority of clefts appear to be due to a combination of genetics and environmental factors </li></ul>
  7. 7. How common is cleft lip and/or palate? <ul><li>Cleft lip and cleft palate is the commonest congenital anomaly of the craniofacial region </li></ul><ul><li>One of every 800 newborns is affected by cleft lip and/or cleft palate. </li></ul><ul><li>There are 32,000 to 35,000 NEW babies born with cleft deformities EVERY YEAR IN INDIA </li></ul>
  8. 8. What is the treatment for cleft lip and/or palate? <ul><li>A child born with a cleft frequently requires several different types of services , including surgery, dental/orthodontic care and speech therapy, all of which need to be provided in a coordinated manner over a period of years </li></ul><ul><li>.(TREATMENT PROTOCOL for cleft lip/palate) </li></ul><ul><li>A cleft lip is usually surgically repaired at 2–3 months and the palate at 9-18 months. Generally, surgery requires a general anaesthetic and takes 1-2 hours. The surgeon rearranges the skin and muscles of the lip or the tissues of the palate so no skin grafting from other parts of the body is needed. </li></ul><ul><li>Most babies recover very quickly and will not experience much pain after this operation. Medication is given for any discomfort. The hospital stay is usually one week. </li></ul>
  9. 9. What other operations may be necessary? <ul><li>Minor improvements to the lip or nose may sometimes be required .( Secondary lip/palate surgery ) It is recommended that any such surgery take place before the child starts school, typically at 4-6 years of age. An alveolar (gum line) bone graft may be necessary at 7-11 years depending on the type of cleft. </li></ul><ul><li>A few children may require an extra operation (pharyngoplasty) to improve speech by reducing the amount of air escaping through the nose. This is usually performed early in childhood (3-4 years) when necessary. </li></ul><ul><li>Other surgery (osteotomy /orthognathic surgery) to help the top and bottom jaw meet in the best position may occasionally be necessary. This is carried out when a child has reached his or her full growth at about 15-18 years of age. </li></ul>
  10. 10. What other kinds of problems could my child with cleft lip and/or palate have? <ul><li>In addition to the physical characteristics common to clefts, your child may have the following problems: </li></ul><ul><li>Problems in feeding </li></ul><ul><li>Dental development — teeth in the area of the cleft may be missing or improperly positioned. </li></ul><ul><li>Speech difficulties — cleft lip does not usually result in speech problems; however, often children with cleft palates benefit greatly from early speech therapy. </li></ul><ul><li>Increased frequency of middle ear infections are possible with cleft palate. </li></ul>
  11. 11. Will this happen to children I have in the future? <ul><li>Cleft lip, with or without cleft palate, can run in families. However, in most cases the cause is unknown with approximately a 4% chance of a subsequent child being affected. A medical genetics evaluation is available at our centre in AIMS and will provide specific information. </li></ul>
  12. 12. Our Treatment Approach in AIMS Kochi <ul><li>In AIMS ,CLEFT LIP AND PALATE CENTRE , Department of Head and Neck surgery , we offer a comprehensive approach to treating the child that should start as soon as the child is born. Our specialists are available for consultation with the child’s family even before they take their baby home from the hospital. </li></ul><ul><li>Ongoing care typically includes treatment planning, genetic counseling, feeding consultation, surgery, speech and language therapy and psychology services, if needed. </li></ul><ul><li>Presurgical orthopaedic devices may be recommended in selected cases to help narrow the cleft prior to repair, as well as to mold the child’s lip and nose. This can result in an improved surgical outcome. Orthopaedic appliances can also improve the child’s sucking and eating abilities while awaiting surgery. </li></ul><ul><li>Cleft lip and nose repair typically takes place at 3 months of age, with cleft palate closure occurring between 9 and 12 months in anticipation of speech and language development. </li></ul>
  13. 13. APPROXIMATE TREATEMENT SEQUENCE <ul><li>Pre surgical orthopaedics </li></ul><ul><li>Primary lip repair at 3 month </li></ul><ul><li>Primary palate ( palatoplasty )repair at 18 months </li></ul><ul><li>Speech therapy </li></ul><ul><li>Secondary lip/palate repair </li></ul><ul><li>Cleft orthodontics </li></ul><ul><li>pharyngoplasty </li></ul><ul><li>Secondary alveolar bone grafting </li></ul><ul><li>Cleft osteotomy / distraction </li></ul><ul><li>Cleft rhinoplasty </li></ul>
  14. 14. Cleft lip unilateral bilateral complete incomplete complete incomplete
  15. 15. Unilateral cleft Lip complete incomplete
  16. 16. Bilateral cleft lip Complete Incomplete pediatric adult
  17. 17. Cleft palate Submucous cleft Cleft of soft palate complete Cleft of soft and part of hard palate Cleft of the alveolus,hard and soft palate
  18. 18. Cleft lip and palate
  19. 19. What can surgery do ?
  20. 20. Palatoplasty(surgical repair of palate) Before surgery 2 months after palatoplasty
  21. 21. Alveolar bone grafting Before grafting 3 months after grafting with the tooth erupting through the graft
  22. 22. Secondary lip repair
  23. 23. CLEFT RHINOPLASTY Before surgery After Rhinoplasty
  24. 24. Feeding in cleft palate children <ul><li>Breast feeding </li></ul><ul><li>Bottle feeding </li></ul><ul><li>Progression to solid foods </li></ul>
  25. 25. Breast feeding the infant with a cleft will depend on such factors as growth, nutritional needs, and the severity and placement of the cleft. Generally, babies with a mild cleft lip or mild cleft of the soft palate are those who have the most success with breast feeding. Until your baby's cleft lip is repaired, try gently holding the upper lip together while breast feeding to help create the needed suction. The human breast can also &quot;mold&quot; to fill the space of an incomplete cleft. Expressing (massaging out) a little milk before a feeding will start the flow of milk. This sometimes helps keep the baby interested and more willing to work at the initial sucks without frustration. Bigger and wider cleft palates create a greater challenge for babies. Experiment with your baby to find good positions for the both of you during breast feeding. Any position you choose should be as nearly upright as possible. When the baby's head is upright gravity helps pull liquid into the throat and stomach, rather than into the nose or ear canals. Keeping milk from the ear canals is important because babies with clefts are at higher risk for ear infections. The child with cleft lip and/or palate allows extra air to be swallowed. Therefore burping the infant regularly is important because the extra air in the stomach takes up space that could be filled with food and increases the chances of spitting up after a feeding. Breast feeding a baby with a cleft lip and/or palate can take two to three times longer than other babies because their suck may be slower . Try not to get frustrated, but accept it as a natural part of your feeding time. Try breast feeding more frequently for a shorter period of time, as the baby will use up too many calories with the long process and get tired. Getting milk &quot;letdown&quot; is difficult if the baby's suck is weak. If your milk production has decreased, you can stimulate your breasts to help maintain milk supply. A breast pump will help stimulate your breasts to increase your milk production. Expressed milk can be stored in a clean container and kept safely in a refrigerator for 24 hours and in a freezer for 2 to 3 weeks. You should be able to breast feed your baby up to several hours before surgery. Discuss this and when it will be all right to begin breast feeding again after surgery with your surgeon. BREAST FEEDING IN CLEFT BABIES
  26. 26. BOTTLE FEEDING IN CLEFT BABIES Bottle Feeding is another option available for the infant with a cleft. However, a cleft lip can cause an air leak around the infant's seal on the nipple, preventing adequate suction. When buying a baby bottle, the most important thing to look for is the softness of the plastic. Soft plastic bottles allow the feeder to squeeze slightly and help control the flow of liquid. Pulsating of the bottle should be done in rhythm with the baby's sucking. The Mead Johnson Company has developed a Cleft Palate Nurser bottle and nipple set that includes a comfortable soft plastic bottle and a soft nipple with a cross-cut end. There are many different types of nipples out on the market. An effective nipple is usually soft and has a cross cut or several extra holes. Preemie nipples or regular juice cross-cut nipples work for some infants. Nuk nipples are also effective and may be used with the opening in the nipple facing up toward the palate or facing down toward the tongue. The Haberman Feeder has been designed especially for babies with cleft palates. This bottle has a specially designed nipple that keeps liquid in the nipple once the nipple has been sucked. It has a slice-cut hole that responds to the typical chewing action of these infants. Any position you choose should be as upright as possible. When the baby's head is upright, gravity pulls liquid into the throat and stomach rather than into the nose or ear canals. Keeping milk from the ear canals is important because babies with clefts are at higher risk for ear infections. The child with cleft lip and/or palate allows extra air to be swallowed. Burping is just as important in bottle feeding because the extra air in the stomach takes up space that could be filled with food and increases the chances of spitting up after a feeding . All of these factors play a role in determining how to feed an infant with a cleft. Solids should be introduced to infants with a cleft lip and/or palate at the age of 4 to 6 months. Infants with a cleft palate may need their food more liquefied than other infants their age who do not have a cleft. This can be done by adding extra breast milk or formula to infant cereal, as it is the first food that should be introduced. A special problem for infants who have a cleft palate is food coming through the nose. To help with this try giving small spoonfuls, presented at the front of the mouth. Wait until one spoonful is swallowed before another is presented. If food does come out the nose wipe or rinse the palate opening clean after feeding.
  27. 27. Progression to solid foods should occur as with any other child. A registered dietitian can provide information on the specific types of foods that are acceptable for each child's age group. Spoon feeding is recommended to encourage the practice of lip closure. Liquids can be given by cup staring at 5 months of age. Choking or gagging during feedings can occur from overfilling the child's mouth with fluid. For the child with a cleft palate, foods that are hard or sticky may get into the palate's opening. Upright positioning is also important for this reason. Nutrition is important during the growing years and beyond. Infants with cleft lips and/or palates have the same nutritional needs as other children, yet they may have feeding problems which make it difficult for them to consume enough calories to meet their nutritional needs. PROGRESSION TO SOLID FOODS
  28. 28. HOW TO CONTACT US Cleft palate and Craniofacial centre Department of head and neck surgery A mrita I nstitute of M edical S ciences Amrita lane Elamakkara P.O, Kerala ,India kochi –682026 [email_address] [email_address] 0091-484 –4001401 (direct dept) 0091-484 –4001423 (direct dept ) 0091-484-4001234 (hospital ) 0091-484 – (Fax)