What is Cleft Lip and Cleft Palate?

---

• Cleft lip and cleft palate are birth defects that occur when a baby’s lip or mouth do not form properly during pregnancy. Together, these birth defects commonly are called “orofacial clefts”.

• A cleft palate is a split or opening in the roof of the mouth. A cleft palate can involve the hard palate (the bony front portion of the roof of the mouth) and/or the soft palate (the soft back portion of the roof of the mouth), and can be associated with a cleft lip.

• Having a baby born with a cleft can be upsetting, but cleft lip and cleft palate can be corrected. In most babies, a series of surgeries can restore normal function and achieve a more normal appearance with minimal scarring.

• Cleft lip and cleft palate are among the most common birth defects. Cleft lip and cleft palate can occur on one or both sides of the mouth. Because the lip and the palate develop separately, it is possible to have a cleft lip without a cleft palate, a cleft palate without a cleft lip, or both a cleft lip and cleft palate together (the most frequently occurring defect). 
• Clefts are described based on the structures involved (lip, alveolus, hard palate, soft palate), laterality (unilateral left, unilateral right, or bilateral), and severity (width and extent of structures involved). Clefts can be isolated (cleft lip only or cleft palate only), or they can occur in combination. They can be unilateral or bilateral, and they can be complete or incomplete.

• Incidence of clefts in India is around 1:800–1:1000, and is the fourth most common birth defect. The birth prevalence of clefts is somewhere between 27,000 and 33,000 clefts per year, which means 78 affected infants are born every day, or 3 infants with clefts born every hour. Twice as many boys as girls have a cleft lip, both with and without a cleft palate. However, twice as many girls as boys have cleft palate without a cleft lip.
• The typical distribution of cleft types are:

1. Cleft lip alone – 15%
2. Cleft lip and palate – 45%
3. Isolated cleft palate – 40%.

• Most cases of cleft lip and cleft palate are noticed right away at birth and don't require special tests for diagnosis. 
• Increasingly, cleft lip and cleft palate are seen on ultrasound before the baby is born.

• Ultrasound in four dimensions (4D Sonography) gives a precise dynamic image of the child’s face. 
• This is a real moving portrait of the child in utero. 
• If there is a malformation of the face, it can be perfectly analyzed. 
• The image in four dimensions corresponds perfectly to what will be diagnosed at birth, there will be no aggravation compared to the antenatal diagnosis.

Children with cleft lip with or without cleft palate face a variety of challenges, depending on the type and severity of the cleft.

• Difficulty feeding. One of the most immediate concerns after birth is feeding. While most babies with cleft lip can breast-feed, a cleft palate may make sucking difficult.
• Ear infections and hearing loss. Babies with cleft palate are especially at risk of developing middle ear fluid and hearing loss.
• Dental problems. If the cleft extends through the upper gum, tooth development may be affected.
• Speech difficulties. Because the palate is used in forming sounds, the development of normal speech can be affected by a cleft palate. Speech may sound too nasal.
• Challenges of coping with a medical condition. Children with clefts may face social, emotional and behavioural problems due to differences in appearance and the stress of intensive medical care.

• Most babies born with a cleft lip (and no cleft palate) feed well without any special equipment. They usually can breastfeed or use a regular bottle-feeding system.
• The only change needed might be positioning the nipple so the baby can latch. If you're breastfeeding your baby, try changing the feeding position so that your breast fills the cleft.

• Spoon, Cup or dropper feeding were found as the most common feeding method practiced by the parents of children with cleft lip and palate. 
• Spoon-feeding can be more hygienic than bottle-feeding, as it is easier to keep cups and spoons clean than it is to ensure that bottles are safely sanitary. 
• However, it takes more time to spoon- feed a baby than it does to bottle-feed them the same volume, and babies are more likely to swallow air while spoon-feeding. 

• Feedings should take less than 30 minutes. If they take longer, try a faster flow nipple.
• Place your baby in an upright, sitting position to prevent the formula from flowing back into the nose area.
• Burp your baby often, about every 5 minutes during the feed.
• Keep your baby upright during the feeding and for 20–30 minutes after to limit nasal regurgitation. If milk leaks out of your baby's nose, wipe it away with a clean cloth. You do not need to use a suction bulb.
• Though babies with a cleft palate can't breastfeed, moms can feed them breast milk in the bottle. They also can do non-nutritive sucking to further bond with their babies. This is when a baby sucks at the breast for comfort, not for feeding. Limit your baby's non-nutritive sucking to less than 10 minutes per feed.

• Feeding challenges put babies with a cleft palate at risk for failure to thrive. Regular weight checks by your baby's doctor or the cleft team can help make sure your baby is gaining enough weight.
• Sometimes babies fed with a specialty system still have feeding problems or trouble gaining weight. They might be uncomfortable during feeding and not get as much milk as they should. 
• Signs to watch for include:

1. coughing (during or after feeds)
2. choking
3. watery eyes
4. furrowing eyebrows
5. back arching during feeds

• Change your feeding strategy if you see any of these signs from your baby. For instance:

1. Try using a slower flow rate nipple to limit the amount of milk your baby takes at one time.
2. Allow for more pauses during the feed. Tip the bottle sideways after every few swallows.

• If you have any concerns about your baby's feeding, call your cleft and craniofacial team right away. The feeding therapist and/or nurse practitioner can check your baby during feeding. They can make changes to the feeding system or recommend other testing.

• Spoon feeding for infants with a cleft lip and cleft palate should begin at approximately 6 months of age just as it would for children without a cleft lip and cleft palate. Strained, thin pureed foods should not be a problem for infants with clefts. 
• These infants should be introduced to spoon feeding to enhance normal development in the use of spoon feeding. When spoon feeding, avoid thickened foods to ensure that these consistencies do not get lodged in the cleft area. Furthermore, spicy foods should be avoided, due to the sensitivity of the nasal mucosa. 
• Specific foods to avoid when spoon feeding is used are: Peanut butter, cooked cheese dishes (because of the sticky consistency. By avoiding these types of foods, spoon feeding can be successful for infants with cleft lip and/or palate preoperatively as well as postoperatively.

• Nasoalveolar molding (NAM) is a presurgical therapy used to reduce the size of the cleft of the lip, gum and nose before surgical repair.

• NAM begins as soon as possible as early as the baby’s first week of life. An orthodontist makes a mold of the newborn’s mouth. This mold is used to create the NAM device, which is similar to an orthodontic retainer. Except for cleaning, the baby wears the device 24 hours a day. Its shape gently directs the growth of the upper jaw and gums. 
• During this time, the baby visits the orthodontist every week in order to make adjustments to the NAM device. 
• Once the cleft has reduced in width, the orthodontist adds a wire with an acrylic tip that fits into the nose. The acrylic tip gently lifts the nose. At the same time, tape connected to the appliance pulls down on the nose. The stretching raises the flattened, cleft side of the nostril. This process gradually improves the baby’s appearance and improves the position and shape of the nose. 

• The molding plate and nasal stent are not painful. After getting used to the plate for a few days, many babies seem happier wearing it than they did without it. 
• This may happen because the plate acts as a palate (roof of the mouth). 
• It keeps your baby’s tongue from pushing into the cleft, and it makes feeding easier for your baby.

• Before proceeding for cleft lip and cleft palate surgery, consult you cleft surgeon. He may advise some laboratory investigations and he will give some instructions which you need to follow before and after surgery.

When general anesthesia is needed, there are important rules for eating and drinking that must be followed in the hours before the surgery. The Cleft Surgeon will give you specific eating and drinking instructions for your child based on your child’s age. 

• For children older than 12 months, After midnight the night before the surgery, do not give any solid food or non-clear liquids. That includes milk, formula, juices with pulp, and chewing gum or candy.
• For Infants under 12 months, Up to 6 hours before surgery formula milk can be given and up to 4 hours before surgery Breast milk can be given. 
• For All age children, Up to 2 hours before the scheduled arrival time, give only clear liquids. Clear liquids include water or glucose water.

Lip repair surgery is usually done when your baby is around 4-6 months old. Your baby will be given a general anaesthesia and the cleft lip will be repaired and closed with stitches. Our Cleft Surgeon Dr. Parit Ladani has developed in his own technique by modifying the gold standard Millard Technique which is used extensively worldwide. His new technique provides excellent scar and reconstruct natural looking lip. Dr. Parit Ladani’s main interest is primary correction of nose during Cleft Lip Repair. He innovated the use of septal cartilage for Correction of Cleft Nose deformity primarily during Cleft Lip repair. His method produces good nasal symmetry and excellent long term stable results. Please visit gallery to see some before and after surgery picture. The operation usually takes 1 to 2 hours. Most babies are in hospital for 1 to 2 days. Arrangements may be made for you to stay with them during this time. The stitches will be removed after a few days, or may dissolve on their own.

• Young infants should be eating only breast milk or formula. When feeding, hold your infant in an upright position. Use a cup or the side of a spoon for giving your child drinks. If you use a bottle, use only the kind of bottle and nipple that your doctor has recommended.
• Your baby should be able to drink and eat the same as before the surgery. The upper lip may be sore for several days, and your baby may be fussy at feeding time.  It may help to give the prescribed pain medicine about an hour before feeding time. After each feeding, give your baby 1/2 ounce of water to rinse his mouth.
• Older infants or young children will need to have their food softened or pureed for some time after surgery so it is easy to swallow. Use a blender or food processor to prepare food for your child. Always make sure the food is cooked until it is soft, then pureed.
• Children who are eating foods other than breast milk or formula should be sitting when they eat. Feed them only with a spoon. Do not use forks, straws, chopsticks, or other utensils that can harm their incisions.

• The incision site will have a little redness and swelling for about 2 weeks. Try not to get it wet.
• You might see blood clots in the nostrils; do not remove them for 2 weeks. You may accidentally pull out the stitches if you try to remove the clots.
• Clean the incision (surgery wound) after feeding your child.
• Your Cleft Surgeon may give you a special liquid for cleaning the wound. Use a cotton swab to do so. If not, clean with warm water and soap.
• Wash your hands before starting.
• Begin at the end that is closer to the nose.
• Always begin cleaning away from the incision in small circles. Do not rub right on the wound.
• If your doctor gave you an antibiotic ointment, put it on your child's incision after it is clean and dry. 
• Some stitches will break apart or go away on their own. The Surgeon will need to take others out at the first follow-up visit. Do not remove your child's stitches yourself.
• After the sutures are taken out, continue to wash the lip and nose with the hydrogen peroxide/water mix and apply a light layer of antibiotic ointment for the next 2 days. You will be told when to begin to use a moisturizing lotion or scar cream to moisturize and massage the scar.

• Cleft Palate repair surgery is usually done when your baby is 9 to 18 months old. Your baby will be given a general anaesthesia. The gap in the roof of the mouth is closed and the muscles and the lining of the palate are rearranged. The wound is closed with dissolvable stitches. 
• Our Cleft Surgeon Dr. Parit Ladani has his own modification of conventional technique of Palate repair. His primary goal is to do morpho-functional repair of speech muscle and achieving good length of palate. This help to achieve good function of speech muscle and closure of velum during speech. With this modified technique, most of the children’s are able to speak normally without any nasality. 
• The operation usually takes about 2 hours. Most children are in hospital for 1 to 3 days, and again arrangements may be made for you to stay with them.

• During this time, it is most important to make sure that your child is drinking enough liquids to stay hydrated. Your Child should be able to drink and eat the same as before the surgery in one or two days. The palate may be sore for several days, and your baby may be fussy at feeding time.  It may help to give the prescribed pain medicine about an hour before feeding time. After each feeding, give your baby 1/2 ounce of water to rinse his mouth.
• Children who are eating foods other than breast milk or formula should be sitting when they eat. Always make sure their food is cooked until it is soft, then pureed so it is easy to swallow. Feed them only with a spoon. Do not use forks, straws, chopsticks, or other utensils that can harm their incisions. 

• Your child will have set of padded arm splints placed on his or her arms to prevent them from bending at the elbow. 
• These arm splints will need to stay in place for about 2-3 weeks as the surgical scar heals.  These splints keep your child from putting their fingers into the mouth and accidentally damaging the repair. 
• Before your child leaves the hospital, be sure a nurse shows you how to put the splints on properly.

Call your Cleft Surgeon if your child has:

• Fever over 101°F when taken rectally, axillary (under the arm) or in the ear.
• Trouble breathing or skin color changes (pale, blue or gray)
• New openings or gaps in the incision
• Bleeding or injury to the incision
• Fever over 101°F when taken rectally, axillary (under the arm) or in the ear.
• Pain that does not go away when you give pain medicine.
• Trouble drinking or eating. 
• A dry diaper for 8 hours or more.
• Taken too much medicine or the wrong medicine. 

Be handled efficiently by experts. However, certain aspects may sometimes trigger the failure of fusion. These include:

• Infection at the Website of operation
• Bleeding
• Minor breathing issues
• Allergies because of suture materials
• Residual Hazards and asymmetries from the nose or lip
• Another potential complication is oronasal fistula by which the operation area doesn’t cure for a number of causes. This could cause regurgitation of liquid and food in addition to difficulty in the address.

• The problems caused by oronasal fistulas depend on the size of the fistulas. Some of these fistulas are so small that they may not cause any obvious problems and the patient may be unaware of their existence. 
• Larger fistula is often a nuisance that permits liquids and occasionally solid food to go through into the nose. When attempting to drink, fluid may embarrassingly escape through the nose and run down on the upper lip. 
• Oro nasal fistulas can be bothersome to the patient if popcorn kernels, nuts, or grains become lodged in the opening. Food particles that become impacted into a fistula produce malodorous breath. 
• As nasal secretion seeps into the mouth, it produces a bad taste, poor oral hygiene, and bad breath. 
• Oro nasal fistula can affect speech and resonance and result in hypernasality, audible nasal escape which distorts articulation and weakness of pressure consonants. 

• Children with a cleft palate are more likely to develop a condition called glue ear, where fluid builds up in the ear. This is because the muscles in the palate are connected to the middle ear. If the muscles are not working properly because of the cleft, sticky secretions may build up within the middle ear and may reduce hearing. 
• Your child will have regular hearing tests to check for any issues. Hearing problems may improve after cleft palate repair and, if necessary, can be treated by inserting tiny plastic tubes called grommets into the eardrums. These allow the fluid to drain from the ear. Sometimes, hearing aids may be recommended.

• During normal speech, the soft palate muscle in the mouth moves up and down and touches the back of the throat. To produce oral consonants (letters such as p, w, and x), the soft palate closes against the back of the throat. When the muscle closes tightly against the back of the throat, air cannot come out the nose. 
• Velopharyngeal insufficiency (VPI) is when the soft palate does not close tightly against the back of the throat, leading to air coming out the nose (characterized by hypernasality and/or nasal air emission) during speech. This can cause speech that is difficult to understand.  About 20% of children who have a repaired cleft palate will have persistent VPI.

• Children with VPI often produce sounds incorrectly and speech therapy is recommended to help them pronounce sounds properly. Research has shown that blowing bubbles and using oral-motor exercises are not effective for improving velopharyngeal function.
• Surgery is commonly needed to improve VPI. The most common types of surgery for VPI are furlow palatoplasty, sphincter pharyngoplasty, pharyngeal flap, or a posterior pharyngeal wall injection augmentation. The size and shape of the velopharyngeal gap will dictate the type of surgery that is necessary. A speech evaluation is recommended approximately six weeks after surgery to re-evaluate speech and determine if therapy is recommended.

• Children born with a cleft that went through the gum and affects their teeth will usually need more extensive orthodontic treatment. 
• Orthodontic treatment which helps improve the alignment and appearance of teeth, may also be required. This can include braces or other dental appliances to help straighten the teeth. 
• Most children with a cleft palate will require palatal expansion around age 6-7. Brace treatment usually starts after all the baby teeth have been lost, but may be necessary before a bone graft to repair the cleft in the gum. 
• Orthodontic care is required also in preparation for jaw surgery (orthognathic surgery).

• Some children who are born with both a cleft lip and a cleft palate also have a problem with the alveolar bone, which makes up the gum ridge or front portion of the roof of the mouth. The alveolar bone is a thin layer of bone that forms the sockets around the roots of the upper teeth under the gum tissue. 
• Clefts of the alveolus are usually left open after the initial cleft lip and cleft palate repairs. Bone grafting helps to support the adult teeth in the cleft area, closes any remaining gaps in the cleft site and provides support for the base of the nose.

• Bone grafting needs to occur before adult teeth develop in the cleft area.  This timing is based on individual dental development.  Your child’s surgeon and cleft specialty trained orthodontist monitor this development during your child’s annual cleft team visits.  
• These providers use a cone beam computed tomography (CBCT) scan to evaluate your child’s developing teeth.  These scans typically begin around 6 years of age.  Grafting is usually done between 6 and 10 years of age, depending on the child’s dental development. 

• Your child’s oral and maxillofacial surgeon does alveolar bone grafting.  The surgeon will do the procedure in the operating room under general anesthesia, with close monitoring. Bone is typically taken from the iliac crest (hip bone).  The surgeon makes a small incision in the hip area, then removes some of the spongy bone from the inside of the hip bone.  
• Incisions are then made in the gums at the cleft site, and the spongy bone is placed into the alveolar cleft.  Dissolvable stitches will be placed to close the incisions inside the mouth and to hold the graft in place.  The surgeon will close the incision in the hip with dissolvable stitches.  
• A dressing will be placed over the hip incision.  Do not pull this off.  It will fall off on its own after 2 to 3 weeks. This surgery usually takes between 2 to 3 hours, depending on the type and size of graft your child needs. 
• Local anaesthetic will be used in the mouth and hip area during the operation. Part of their mouth and hip area may be numb when they wake up. Your child will stay overnight for at least 1 day after the surgery.

• Your child should not swim or soak their hip in a bathtub or hot tub for 3 weeks. It is OK to shower after the doctor or nurse removes the bandage on the hip.
• No strenuous sports or activities for 4 to 6 weeks.
• Your child also may have an acrylic splint or retainer in their mouth.  This retainer helps to keep the teeth stable as the bone graft heals.  Remove and wash the splint with dish soap and water after meals and before sleep at night.

There are many good food choices for your child after surgery. Always make sure the food is cooked until it is soft, then pureed. Good food options include:

• Cooked meats, fish, or chicken. Blend with broth, water, or milk.
• Mashed tofu or mashed potatoes. Make sure they are smooth and thinner than normal.
• Yogurt, pudding, or gelatin.
• Small curd cottage cheese.
• Formula or milk.
• Creamy soups.
• Cooked cereals and baby foods. 

• Fever or chills
• Worsening pain or discomfort
• Breakdown or opening of the mouth or hip incisions
• Heavy bleeding from the mouth or hip
• Redness or drainage of pus from the incision
• Inability to tolerate drinking fluids
• Bleeding from the nose or gum line
• Oozing or drainage from the gum line
• Opening of the incisions in the mouth or hip
• Drainage or redness at the hip surgery site
• Pain that is not controlled by the medicines prescribed
• Fever of 101 degrees F or higher

• Cleft rhinoplasty is a nasal reshaping surgery for people with an abnormal appearance of their nose due to cleft lip and palate. Cleft rhinoplasty is far more complex than a typical rhinoplasty (“nose job”) which is why it is important to find a surgeon with experience performing cleft rhinoplasty. 
• It is critical to have an experienced surgeon perform your cleft rhinoplasty. Dr. Parit Ladani had extensive training in cleft rhinoplasty during his fellowship. He has performed more than 800 cleft rhinoplasty till date. Dr. Parit Ladani performs both primary and secondary cleft lip rhinoplasty procedures and is known among Cleft Surgeons as one of the best cleft rhinoplasty surgeon of India.

• Dr. Parit Ladani uses an open approach to cleft rhinoplasty because the open approach allows direct visualization of the nasal cartilages. Open rhinoplasty requires a small incision in the columella (the skin between the nostrils) through which the skin of the nose is elevated off of the underlying cartilage and bone. This incision typically heals with an imperceivable scar.
• Depending on the strength and position of the cartilage and bone and the goals of surgery, a variety of manoeuvres are used to reshape the nose and improve breathing. Graft is harvested from nasal septum, ear cartilage or rib cartilage in every cleft rhinoplasty to change the shape of the nose. 
• After the desired changes in shape are achieved the nose is closed with fine stitches. At the end of surgery soft splints may be placed inside your nose to support the nasal septum. Soft splints are frequently used on the outside of the nose also to help shape the skin. Tapes and a splint are placed over the nasal bridge to support and protect the nose for 7 days. Typically the procedure takes 2-3 hours. After recovering from anesthesia you will be taken home the same day as surgery.