FAQ

What is it?

Cleft lip is a separation of the two sides of the lip.  The separation can include the bone of the upper jaw and/or upper gum.  A cleft palate is an opening or separation in the roof of the mouth in which the two sides of the palate have not joined together.  Development of the lip and palate occur early in pregnancy, within the first trimester, and occur at different times.  A cleft lip develops around the 6th week of pregnancy and a cleft palate develops a little later, around the 8th or 9th week.  These openings can be on just the left or the right side of the face or palate (called a "unilateral cleft") or on both sides (called a "bilateral cleft").  A child can be born with a cleft lip, a cleft palate, or both.  About 1 in every 700 babies is born with cleft lip/cleft palate in the United States.

Cleft lip and cleft palate are birth defects and are due to a combination of genetic (family) make up and unknown environmental factors.  Due to the early development of the lip and palate, and before many women realize that they are pregnant, harmful substances such as alcohol, drugs, smoking, etc many contribute to the formation of the cleft.

A child born with cleft lip and palate will usually require the skills of several health care specialists to correct and facilitate care.  For that reason, parents should seek the help of a Cleft Lip and Palate Team as early as possible.  Treatment usually begins in infancy and continues into the teenage years.  A cleft team consists of surgeons, pediatric dentists, an orthodontist, ear/nose/throat specialists (ENTs), a geneticist, speech and hearing specialists, a cleft nurse, a social worker, and a nutritionist.  Each member will evaluate your child individually on a yearly basis, or more often if needed, and will meet together in a team approach to discuss treatment plan recommendations for your child.  These recommendations are then shared with you, your child's doctor, and each health care provider so that you and other key people can be involved in your child's care.

Who Would Benefit From A Cleft Team?

Any child with a cleft lip or cleft palate would benefit from a Cleft Lip and Palate Team.

What Will The Evaluation Be?

Optimal time for the first evaluation is right after birth; however, referral for team evaluation is appropriate at any age.  At the time of the child's first visit, the child will have an extensive evaluation and an individualized plan of care will be developed. The principal role of the cleft team is to assure quality and continuity of care and longitudinal follow-up.  The interdisciplinary team provides specialized treatment options involving each parent and patient's understanding, and the team coordinates and implements treatment plans to achieve optimal care for your child.

What will treatments Involve?

Treatments for a patient with a cleft lip or cleft palate include repair of the lip, repair of the palate, a pharyngoplasty for speech, bone grafts, jaw surgery, and lip and nasal revisions.

• Cleft Lip Surgery is the surgical repair of the lip which is usually done around three months of age, although optimum timing of repairs vary and are based on individual circumstances.  Cleft lip surgery can be repaired in a single surgical procedure or in multiple surgeries, depending on the width and extent of the cleft.  Repair of a cleft lip is done under general anesthesia in the operating room.  The surgeon will make an incision on either side of the cleft from the mouth to the nostril.  The skin and tissues of the lip will be pulled  together to close the lip.  It will sometimes require additional surgeries to achieve the best possible appearance of the child's lip.  The scar of the lip will usually be red after surgery.  Although it will eventually fade, the scar will not completely disappear.

          After surgery your child may be restless.  Your doctor will prescribe medication to help relieve

          any discomfort.  Sometimes elbow restraints may be used to prevent your child from

          disturbing the incision.

• Cleft Palate Surgery is the repair of the palate which usually requires a more extensive surgery and will be done around ten months of life.  The focus of the cleft palate operation is to repair the muscles of the palate to aid in feeding and speech abilities.  The surgeon will make an incision on either side of the separation, moving tissue, and muscle to close the palate.  This surgery is done in an operating room under general anesthesia. 

          A small hole (called a "fistula") may occur between the nose and the mouth.  If a fistula occurs,

          the child usually has no problems with speech and the fistula can be closed at any time with a

          simple procedure.

         Both cleft lip and cleft palate surgeries may necessitate further operations depending on the

         severity of the lip and palate and the shape and thickness of tissue available to repair the

         cleft. Not all patients will require additional surgeries, but some will need revisions of the nose

         and lip to enhance the facial appearance. 

• Pharyngoplasty is surgery done on a child who has a repaired cleft palate and has too much air or fluids escaping from the back of the nose resulting in nasal speech and fluid reflux. This occurs because the palate is too short and does not function properly.  This condition is referred to as VPI  "velopharyngeal incompetence".  The purpose of a pharyngoplasty is to prevent escape of air or fluids through the nose, therefore improving speech and swallowing.  In this procedure, tissue is taken from the palate and the back of the throat and they are repositioned to help close off the large opening at the back of the nose.  This procedure is done in an operating room under general anesthesia.

• Bone Graft to Cleft Defect - A child that has had a cleft defect may require a bone graft to be placed in the area of the defect to replace missing bone or teeth.  This is called an alveolar bone graft.  Bone grafting to a cleft defect is usually done between four and eleven years of age. Bone grafting is an operation that involves taking a small bone from one place (usually the hip) and placing it in the area of the cleft near the teeth. This particular procedure is done to provide a stable support for the unerupted teeth next to the cleft; this will support the lip and nose and improve the contour, forming a continuous upper gum ridge (to create a more natural appearance).

• Jaw Surgery - A child who has had cleft lip and palate and subsequent repair may have a resulting facial imbalance,  teeth which may not fit together properly, and changes in speaking and chewing. This imbalance is in the upper jaw (maxilla) and results in a severe underbite and sometimes breathing through the nose.  A new technique has been developed and is called distraction and it can lengthen and correct a small upper jaw.  The best technique for your child will be discussed by the surgeon.  Both procedures require general anesthesia in the operating room.  Surgery is usually done in conjunction with an orthodontist.  Jaw surgery is done using small bones plates and screws once the jaw bones are properly aligned.

• Lip and Nasal Revision - Lip and nasal revision may be done to improve the appearance and function of the lip and nose.  The surgery usually is recommended due to a flattened nose or asymmetry.  Surgery is done to provide definition and support.  Ear cartilage may be used to build up the nose.  Lip and nasal revisions can be done any time there is a need; however, if the child waits until the teenage years the long-term results are more predictable.

Frequently Asked Questions

How do cleft lip and palate occur? 

 Each of us had a cleft lip and cleft palate when in utero (in our Mother's womb).  During the early weeks of pregnancy the lip and palate normally fuse together.  The lip forms the "Cupid's Bow", which is found under the nose, and the palate forms the ridge and pale line in the middle of the roof of the mouth.  If your child has a cleft, the fusion of the lip and/or palate fail to fuse together during development.

Why does the fusion of the palate fail to happen?

Cleft lip and/or palate occur in approximately 1 in 700 births. In most cases, the reason for the cleft(s) is unknown.  Known causes are due to genetics, smoking, alcohol, substance abuse etc.; unknown causes may include environmental reasons.

Heredity (or genetics) plays an important role in some families.  Clefts can appear in one or several family members.  Cleft lips occur more often in boys and cleft palates occur more often in girls.  Asians are more affected than Caucasians;  clefts are least common in persons of African descent.

Sometimes substances in the environment have been linked to clefts.  Some children with clefts (especially cleft palates) may have associated abnormalities of the spine, heart, kidneys, etc.

Did we do anything wrong?

Participation in the known causes of cleft lip/cleft palate as  listed under the question immediately prior to this one,  may have affected the development of cleft lip/palate in your child, but it may not have.  The reason why clefts do not fuse in certain babies is unknown.  Even though genetics may play a factor, it is  not your fault.  All of us carry abnormal genes that can be passed on to our children and even our   grandchildren.

Can my baby nurse?

Infants who only have a cleft lip will be able to breast feed without difficulties.  Infants who only have a cleft palate can breast feed if the cleft (the separation in the roof of the mouth) is narrow.  Infants who have both cleft lip and palate can breast feed, but this is challenging and may require a specialist (a nurse who is a lactation specialist) to help.  Even then, breast feeding may not be possible.  Breast milk or formula can be given with a special bottle made just for cleft babies.

How will by baby talk?

Your baby should not have any problems learning to talk if he/she has only a cleft lip.  If your baby has a cleft palate, then it may take a little longer to learn to talk, and often it may require speech therapy in the early years.

What other problems may my baby have?

The most common problem that children with cleft palates will have are ear infections.  An ENT (and Ear, Nose, and Throat Specialist) will place tubes in the child's ears to allow the fluid in the ear to drain properly.  This procedure is usually performed at the same time as the palate repair.

Children with clefts also have more dental problems.  It is important for the child to be followed regularly  by a pediatric dentist and orthodontist who specialize in the special needs of children with clefts.  Most children will require braces placed by the orthodontist to straighten the teeth around the cleft.

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