Did you know that the roof of the mouth (palate) is formed between the sixth and ninth weeks of pregnancy. A cleft palate happens if the tissue that makes up the roof of the mouth does not join together completely during pregnancy. For some babies, both the front and back parts of the palate are open. For other babies, only part of the palate is open.

Did you know that Cleft lip and/or palate is one of the most common problems found in newborn babies.

Did you know that children with a cleft lip with or without a cleft palate or a cleft palate alone often have problems with feeding and speaking clearly and can have ear infections.

Did you know that children also might have hearing problems and problems with their teeth.

Did you know thatthe causes of orofacial clefts among most infants are unknown. Some children have a cleft lip or cleft palate because of changes in their genes. Cleft lip and cleft palate are thought to be caused by a combination of genes and other factors, such as things the mother comes in contact with in her environment, or what the mother eats or drinks, or certain medications she uses during pregnancy.

Did you know that Orofacial clefts, especially cleft lip with or without cleft palate, can be diagnosed during pregnancy by a routine ultrasound. They can also be diagnosed after the baby is born, especially cleft palate.

Did you know that sometimes certain types of cleft palate (for example, submucous cleft palate and bifid uvula) might not be diagnosed until later in life.

Did you know that treatment for children with orofacial clefts can vary depending on the severity of the cleft; the child’s age and needs; and the presence of associated syndromes or other birth defects, or both.

Did you know that surgery to repair a cleft lip usually occurs in the first few months of life and is recommended within the first 12 months of life.

Did you know that surgery to repair a cleft palate is recommended within the first 18 months of life or earlier if possible. Many children will need additional surgical procedures as they get older.

Did you know that surgical repair can improve the look and appearance of a child’s face and might also improve breathing, hearing, and speech and language development.

Did you know that children born with orofacial clefts might need other types of treatments and services, such as special dental or orthodontic care or speech therapy.

Did you know that with treatment, most children with orofacial clefts do well and lead a healthy life.

Did you know that some babies with clefts have very few or no problems feeding, while others have more difficulty. Use of special bottles and careful positioning of the baby are sometimes helpful modifications.

Did you know that there is no relationship between mental retardation and cleft lip and palate. However, if the cleft is part of a cluster of other problems (a syndrome), learning ability is sometimes affected.

Did you know that the more specialists participating on the team, the more likely every aspect of treatment can be considered during the team evaluation. The specific staff will be determined by the availability of qualified personnel and by the types of patients served by the team.

Occurrence of Cleft Births

• India is one of the most populous areas of the world with an estimated population of 1.1 billion. The approximate birth rate is estimated to be 24.5 million births per year and prevalence of clefts cases are somewhere between 27,000 and 35,000 cases per year.
• More than half do not receive any treatment because they do not know a cleft can be fully corrected or are too poor to travel to a hospital. There are over 10 lakh cases of untreated clefts in India. Most do not know that the problem can be solved by a simple surgery soon after birth, or they simply cannot afford it.
• A Cleft is more of an economic problem than a medical one. Majority of untreated clefts are where poverty, illiteracy and misinformation are rampant, and access to medical resources is scarce. Widespread superstition along with social taboos compound the problem.

The Bare Facts

• 92% of patients' families cannot afford the cost of surgery
• 30% of them are not aware that the condition can be corrected
• 5% are afraid of surgery

A common clinical observation among children with cleft palate is high prevalence of recurrent upper and lower respiratory tract infection.

Cleft Lip & Palate Burden

• In the 28 states with available data, an estimated 72 637 cases of unrepaired CL/P (uncertainty interval, 58 644 - 97 870 cases) were detected.
• The percentage of individuals with unrepaired CL/P who were older than the respective target ages ranged from 37.0% (95% CI, 30.6%-43.8%) in Goa to 65.8% (95% CI, 60.3%-70.9%) in Bihar (median, 57.9%; interquartile range, 52.6%-63.4%).
• The rate of unrepaired CL/Ps ranged from less than 3.5 per 100 000 population in Kerala and Goa to 10.9 per 100 000 population in Bihar (median rate, 5.9 [interquartile range, 4.6-7.3] per 100 000 population).

Conclusions and Relevance

• An estimated 72 000 cases of unrepaired CL/P are found in India.
• Poor states with less health care infrastructure have exceptionally high rates (eg, Bihar).
• These estimates are useful for informing international and national CL/P care strategies, allocating resources, and advocating for individuals and families affected by CL/P more broadly.
• HSF is trying to address the problem of treatment and quality care of OFC cases. There still need for improvement in availability of quality health care for OFC cases in our country.

Cleft lip and cleft palate are birth defects of the mouth that form during early fetal development. Genetic mutations that cause cleft lip and cleft palate are not preventable. If you have already had a child who has cleft lip and palate, then the chances of any other children you conceive having the condition increase. Because in most cases cleft lip and palate is an inherited condition. There is really nothing parents can do in such cases to prevent cleft lip and palate from forming in their babies.

But pregnant women can take certain precautions to prevent environmental exposures that may increase the risk of having a child born with cleft lip or cleft palate. Cleft lip and palate like other deformities forms during the first three months of pregnancy. This is the time when the tissues of the face come together from either side to fuse in the middle.But by following the simple steps and advice set out below you can take a step closer to having a healthy baby.

Preconception and Prenatal Care

Folic acid supplements- Folic acid is a B vitamin that is thought to play a role in the development of the fetal brain and spinal cord especially during the first trimester of pregnancy. Folic acid supplement is must during the first two months of pregnancy. This is the period during which the roof of the baby’s mouth and the lips develop in the womb. Folic acid in fact is needed even before a woman is aware of her pregnancy. Thus all women who may conceive even unplanned are advised to take 400 micrograms of folic acid per day in dietary supplements or foods that are fortified with folic acid. Women should take a daily supplement of 0.4mg of folic acid before they conceive and for the first 12 weeks of pregnancy. Folic acid is an essential vitamin found in meat, fresh fruit and vegetables. It is added to many breakfast cereals, of which one standard serving gives a quarter of the Daily Recommended Allowance (DRA).

Ultrasound scans and detecting cleft lip and palate - Cleft lip and palate may sometimes be detected using ultrasound scans during pregnancy. This is usually done at the anatomy scan at 18th to 20th week of pregnancy. While some cleft lips and palates occur without other defects, they may also be part of other genetic defects and syndromes. Early diagnosis of these syndromes may be made. Parents are counselled regarding the condition of their baby. The family may also be referred for genetic counselling and other tests. Genetic counselling can identify high-risk families. The cleft palate and lip management team prepares the parents for initial management of their baby after birth.

Medication - There are several drugs and medications that have been linked to the development of cleft lip and palate. If you are currently taking medication and are thinking about having a baby then you should discuss this with your doctor. If medication is not of utmost importance then you can choose to stop taking it during the period of pregnancy.

Reduce your risks for infections during pregnancy. Some infections can increase the risk that a fetus will develop cleft lip or cleft palate. For example, make sure all the meat you eat is cooked well. This practice can help keep you from getting toxoplasmosis, an infection that you can get from eating undercooked meat or from handling a cat or its feces.

Healthy living

Though it may seem an obvious thing to say, living a healthy life style before and during pregnancy can make a real difference to whether or not your child develops symptoms of cleft lip and palate. You must consider what dangerous habits you have and then make the necessary changes. Below are some tips on behavioural activities you should and should not partake in:

• Alcohol consumption - Women are recommended an allowance of fourteen units per week, but when pregnant this is shortened to below ten units per month. Going above this limit has been found to quadruple the chances of your child developing cleft lip and palate.
• Smoking and passive exposure - Smoking is never a healthy habit and this is the case even more so when you are pregnant. You could even use the period of pregnancy to give up the habit all together. A doctor would be able to offer advice on the necessary steps to take to quit smoking.
• Do not let yourself be around people who have infectious diseases, such as chickenpox.

Eat and live healthy - Generally there is nothing better than living a healthy lifestyle. Get enough exercise each week, but also take into account how far you are into your pregnancy as to how much exercise you should be doing. Also, eat healthy and try to get in those five- a-day of fruit and vegetables. It really can make a difference to the health of your child.

Having your child diagnosed with cleft lip and palate can be a devastating time. This section aims to highlight aspects of dental care which are particularly important for children with a cleft.

• Dietary counseling is best achieved with a three-day diet diary. This is a procedure that can be carried out at any stage of the child's dental development, especially when there is a caries problem. Erosive tooth surface loss due to the excessive intake of acidic food or drink is also a potential problem in this age group. Any observed tooth wear needs to be carefully monitored and addressed.
• Difficulties with tooth brushing often arise as the upper permanent incisors erupt, due to lack of sulcus depth and tightness of the repaired lip. As in the primary dentition, the upper permanent central incisors in the patient with a bilateral cleft lip and palate may be severely retroclined. Simple measures such as showing the child and parent the cleft region in a hand mirror and disclosing the plaque deposits, especially on the teeth around the cleft, will assist with toothbrushing instruction. This will also help the child to come to terms with the appearance of the cleft and the associated teeth.
• Worries about bleeding from inflamed gingivaearound the cleft region should be identified. The child and parent can be nervous about brushing the area for fear of traumatising the soft tissues, especially following alveolar bone graft surgery. Oral hygiene prior to bone grafting must be of a very high standard as gingival inflammation can cause loss of the new bone. A 0.2% chlorhexidine gluconate mouthwash is useful for short periods following surgery or to help stabilise gingival health in severe cases of gingival inflammation, where the patient is anxious about the bleeding gingival tissues and is nervous to brush. However, there is no substitute for good toothbrushing and this should be re-established as soon as possible.
• Access to the teeth in the cleft region is often difficult and a baby-sized toothbrush is still useful even at this age, especially where the upper lip is tight. This can be supplemented with an interspace brush. Teeth often need to be targeted individually when toothbrushing, as conventional brushing round the arch will exclude abnormally positioned teeth in the cleft region, particularly those placed palatally. The child is shown by the dentist how to lift the upper lip out of the way to facilitate brushing . The cleaning of any anterior teeth positioned high in the labial sulcus should be given special mention.
• Home use of disclosing tablets and the importance of a hand-held or bathroom mirror to aid toothbrushing should be discussed. Parental support with toothbrushing is helpful throughout the mixed dentition period and supervision is advised until at least 7–8 years of age.
• Fissure sealants are an important consideration for this group of patients.The procedure is advisable for first and second permanent molars, and premolars where indicated. Fissure sealing should be carried out as soon as the teeth have erupted sufficiently to allow adequate moisture control of the occlusal surfaces.
• The application of fluoride varnish is a valuable preventive measure. It is particularly useful for hypoplastic permanent incisors, areas of early demineralisation, teeth in the cleft region and partially- erupted permanent molars prior to fissure sealing. Fluoride tablet supplements should be continued throughout this phase if appropriate, or fluoride mouthwash usage could be introduced at this stage if only a topical effect is required.

Radiographic management

• Patients with a cleft lip and palate require many radiographs to monitor growth and development, facilitate planning for orthodontic treatment or surgery and assess outcome and stability.
• Clear guidelines are laid out regarding the recommended frequency of radiographs to diagnose or monitor caries.
• For comprehensive dental care, the bitewing radiograph (or lateral oblique view in the less co-operative patient) is essential to permit thorough treatment planning.
• Further radiographs will be required, as necessary, to investigate the developing dentition and any pathology, trauma, or other dental conditions.

Restorative Care

• If restorative work is needed it should be carried out to a high standard.
• Pulp treatment procedures and stainless steel crowns for primary molars should be used where appropriate.
• The aim is for these teeth to exfoliate naturally, thereby maintaining the original arch relationships and space for the permanent successors, unless extractions are indicated for orthodontic reasons.
• Sealant restorations provide a solution to the early carious lesion, especially in the occlusal surfaces of permanent molar teeth.

Communication with the Cleft Team

• Good communication with the cleft team becomes particularly important from the mixed dentition stage onwards, as orthodontic treatment is often started early for this group of patients.
• Teeth with a poor prognosis should be discussed with the orthodontist involved with cleft care. Extractions should be carried out only after consultation with the orthodontist.
• The dentist should ensure that the child is seen regularly throughout any course of orthodontic treatment for specific toothbrushing instruction, reinforcement of dietary advice and the use of a fluoride mouthrinse where necessary.

The permanent dentition – adolescence to adulthood

• The presence of the permanent dentition usually heralds the start of definitive orthodontic treatment. Patients with a cleft lip and palate often undergo a long course of appliance therapy, sometimes in conjunction with orthognathic surgery to correct the jaw relationship.
• Once again the main role of the dentist is to help the patient maintain good oral health and prevent dental disease.
• During the teenage years the patient can lack motivation and find it difficult to visualise the end result of the orthodontic treatment.
• Peer group pressures are strong and school commitments become more demanding. Avoid missed dental appointments.
• It is important to be aware that as patients with clefts you are not necessarily as dentally-motivated as routine orthodontic patients.
• The latter are a selected group who have chosen to proceed with orthodontic treatment. The dentist is in a position to encourage and support the patient in carrying out the appropriate preventive measures and making them aware of the importance of attending both orthodontic and regular dental check-up appointments.
• The adolescent with a cleft may have to make multiple hospital visits for cleft-related care in addition to other possible medical problems and this should be taken into account.

• These may involve the number, size, shape, and position of both the baby teeth and the permanent teeth. The teeth most commonly affected by the clefting process are those in the area of the cleft, primarily the lateral incisors. Clefts occur between the cuspid and the lateral incisor. In some cases the lateral incisor may be entirely absent. In other cases there may be a “twinning” (twin = two) of the lateral incisor so that one is present on each side of the cleft. In still other cases the incisor, or other teeth, may be present but may be poorly formed with an abnormally shaped crown and/or root. Finally, the teeth in the area of the cleft may be displaced, resulting in their erupting into abnormal positions. Occasionally the central incisors on the cleft side may have some of the same problems as the lateral incisor.

What does this mean for future dental care?

A child with a cleft lip/palate requires the same regular preventive and restorative care as the child without a cleft. However, since children with clefts may have special problems related to missing, malformed, or mal positioned teeth, they require early evaluation by a dentist who is familiar with the needs of the child with a cleft.

Early Dental Care

With proper care, children born with a cleft lip and/or palate can have healthy teeth. This requires proper cleaning, good nutrition, and fluoride treatment. Appropriate cleaning with a small, soft-bristled toothbrush should begin as soon as teeth erupt. Oral hygiene instructions and preventative counseling can be provided by a pediatric dentist or a general dentist. Many dentists recommend that the first dental visit be scheduled at about one year of age or even earlier if there are special dental problems. The early evaluation is usually provided through the Cleft Palate Team. Routine dental care with a local dentist begins at about three years of age. The treatment recommended depends upon many factors. Some children require only preventative care while others will need fillings or removal of a tooth.

Orthodontic Care

The first orthodontic evaluation may be scheduled even before the child has any teeth. The purpose of this visit is to assess facial growth, particularly the growth of the jaws. Later as teeth begin to erupt, the orthodontist will make plans for the child’s short and long-term dental needs. For example, if a child’s upper teeth do not fit together (occlude) properly with the lower teeth, the orthodontist may suggest an early period of treatment to correct the relationship of the upper jaw to the lower jaw. It is not unusual for this initial period of treatment to be followed by a long rest period when the orthodontist monitors facial growth and dental development. With the eruption of the permanent teeth, the final phase of orthodontics completes alignment of the teeth.

Coordinated Dental-Surgical Care

Coordination of treatment between the surgeon and dental specialist is important since several procedures may be completed during the same anesthesia. Restorations or dental extractions can be scheduled at the same time as other surgery.

Coordination between the surgeon and the orthodontist becomes most important in the management of the bony defect in the upper jaw that may result from the cleft. Reconstruction of the cleft defect may be accomplished with a bone graft performed by the surgeon. The orthodontist may place an appliance on the teeth of the upper jaw to prepare for the bone graft. A retainer is usually placed after the bone graft until full braces are applied. When the child approaches adolescence the orthodontist and the surgeon again coordinate their efforts if the teeth do not meet properly because the jaws are in abnormal positions. If the tooth relations cannot be made normal by orthodontics alone, a combined approach of both orthodontics and surgical repositioning of the jaws is necessary. Such surgery is usually performed after the pubertal growth spurt is completed.

Prosthodontic Care

The maxillofacial prosthodontist is an dental specialist who makes artificial teeth and dental appliances to improve the appearance of individuals with cleft and to meet their functional requirements for eating and speaking. The prosthodontist may make a dental bridge to replace missing teeth. Oral appliances called “speech bulbs” or “palatal lifts” may help close the nose from the mouth so that speech will sound more normal. The prosthodontist must also coordinate treatment with the surgeon and/or the orthodontist to assure the best possible result. When a speech bulb or palatal lift is developed, the prosthodontist usually coordinates treatment with the speech pathologist. For the child or adult who wears one of these appliances, the care of the teeth holding the appliance is of particular importance.