Pediatric Cleft Lip and Palate

Learn More about Your Child’s Condition and Bright Future

Camp Courage Most parents go through pregnancy looking forward to the delivery of a perfect, healthy child. 

If your family learns your baby has cleft lip and palate, you may at first feel like you are experiencing a major loss. These feelings and strong emotions are normal. 

We encourage you to celebrate the things that make your child unique and special.

If fact, you share the feelings of many new parents—of not knowing enough, of doing the wrong thing, of making mistakes. You can’t know everything, and no one expects you to. Right now you are the most important person in your child’s life.

The Craniofacial team at Children’s Healthcare of Atlanta is here to support and help you and your baby. As you learn more about your baby’s condition, you will find ways to cope with your feelings of uncertainty and feel good about your child’s future.

Abby and Hannah's Story (21 Images)

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Before and After: Abby and Hannah Before and After: Abby and Hannah
Before and After: Abby and Hannah Before and After: Abby and Hannah
Before and After: Abby and Hannah Before and After: Abby and Hannah
Before and After: Abby and Hannah Before and After: Abby and Hannah
Before and After: Abby and Hannah Before and After: Abby and Hannah
Before and After: Abby and Hannah Before and After: Abby and Hannah
Before and After: Abby and Hannah

Together, these siblings have had 17 surgeries. This photo gallery shows their amazing medical journey at Children's.

 

Cleft Lip and Palate Guide

  • Our Promise to You

      The Children’s Healthcare of Atlanta Craniofacial team wants to provide you and your child with quality, family-centered care. Our team can help support you during your child’s treatment. At each visit, you will encounter nurturing, caring people.

      If you're traveling to our center, we want to make your stay as easy and as comfortable as possible. Let us know if you have any questions about your family's stay.

      About the Information

      We hope you find the information useful that we provide here. Many parents of children with cleft lips and cleft palates say that they have many questions, concerns and fears about caring for their child. Sometimes, your child’s care will be the same as other children; at other times, it may be unique.

      This information has been prepared by the Children’s Center for Craniofacial Disorders. It can help you learn more about your child’s cleft lip and palate.

      Note, this information should not replace instruction given to you by your child’s healthcare team. It is not meant to be medical advice or a complete resource for all information on this subject. Your child’s doctor is the best resource of information about what is right for your child’s treatment. If you have any questions about this information, contact the Children’s Center for Craniofacial Disorders and a nurse will help you.

      Parent Support Group

      Children's offers a Craniofacial Parent Support Group that meets several times a year. The support group provides an open forum to discuss challenges and concerns in helping your child with craniofacial differences.

  • What is Cleft Lip and Palate?

      As a baby's face develops in the womb, a space remains between the nose and mouth. As the face nears its final form in the eighth and twelfth weeks of the pregnancy, this space is closed by the joining of the left and right halves of the upper lip and palate (the roof of the mouth). When this space does not fully close, a baby may be born with a cleft lip and/or a cleft palate. (“Cleft” means a “split” or “separation.”)

      cleft lip

      cleft palate

      Figure 1a: cleft lip

      Figure 1b: cleft palate

      A cleft lip is a split in the upper lip and base of the nose. (See Figure 1a) A cleft palate is a split in the roof of the mouth and back of the nose. (See Figure 1b) A cleft is not necessarily a medical emergency. It causes no pain for your child and is usually not dangerous. About one of every 700 babies has a cleft lip or palate. (This incidence varies with race.)

      unilateral incomplete

      bilateral complete

      bilateral incomplete

      Figure 2a: unilateral incomplete cleft lip

      Figure 2b: bilateral complete cleft lip

      Figure 2c: bilateral incomplete cleft lip

      bilateral complete

      incomplete

      horseshoe palate

      Figure 2d: bilateral complete cleft lip and palate

      Figure 2e: incomplete cleft palate

      Figure 2f: horseshoe palate

      A cleft lip or palate may be on one side of a baby's face (unilateral) or on both sides (bilateral). (See Figures 2a - 2f) Both types can be repaired. However, treatment for a cleft lip and/ or cleft palate is a gradual process. There are many steps that may need to be taken during the next few years or more.

  • Causes of Cleft Lip and Palate

      Your child may have “inherited” his cleft lip and palate from the genes of one or both parents. But other factors may also have occurred during the pregnancy to cause it. The exact cause of a cleft lip and palate often remains unknown.

      Genetic Inheritance

      Genes are the smallest unit of heredity. Heredity is the passing of genes from one generation to the next. Each cell in the human body contains genes. Genes contain the "blueprint" for everything in our bodies, such as our height, hair color, skin color and eye color. Genetic inheritance means that a child’s features are "inherited" (passed from parent to child) from both parents. There are two types of inheritance:

      - In single gene inheritance, a feature appears as a result of a single gene carried by one parent.

      - In multifactorial inheritance, a feature appears as a result of a number of genetic and nongenetic factors.

      Your Geneticist

      A geneticist is a doctor who studies genes. The geneticist or genetic counselor on the Children’s Healthcare of Atlanta Craniofacial team can help you try to find the reason for your child's cleft lip and palate. Your geneticist may need to:

      - Examine you and/or your family members

      - Take X-rays and conduct genetic tests

      - Ask you for a detailed family medical history

      - Ask you for a detailed pregnancy history

      After your geneticist completes such studies, he will talk to you about the possible cause(s) of the cleft lip and palate. Your geneticist will also discuss your risk of having another child with a cleft lip and/or cleft palate.

      Syndromes

      Sometimes, groups of problems appear together in newborn babies. These groups are called syndromes. A cleft lip and/or palate may be only one part of a larger syndrome. Like a cleft lip and palate, a syndrome may be the result of single gene or multifactorial inheritance.

      Your geneticist will consult other members of the Children’s Craniofacial team to learn if your child has other problems that suggest a syndrome. This will help the geneticist tell you more about the risk of a cleft lip and palate in children you may have in the future.

  • Your Treatment Team

      Your child needs a treatment plan that is made just for him. The plan requires a team of people who play different roles in your child’s care. This team is called the craniofacial team. The Children’s Healthcare of Atlanta Craniofacial team includes the following professionals:

      Audiologist (aw dee ah’ lah jist): A person who studies and tests sound and hearing

      Craniofacial surgeon (cray’ nee o fay shul/sur’ jen): The doctor who performs many of your child’s facial surgeries

      Dental hygienist (hi jen’ ist) and assistants: People who provide many types of dental care and education for parents

      Geneticist (jen et’ ah sist): A doctor who studies genetics (the study of genes)

      Lactation (lack tay’ shun) Consultant: A person who helps with breastfeeding and pumping breast milk

      Neuropsychologist (ner o sy call’ a jist): A person who tests children to find out about and help with cognitive (mental skills) problems

      Nurse: Someone who coordinates care and provides education

      Nutritionist (new trish’ on ist): A person who plans healthy diets and helps with feedings

      Occupational (oc you pay’ shun ul) therapist: A person who helps people with daily care activities like feeding and bathing

      Orthodontist (orth ah don’ tist): A dentist who uses braces and other devices to correct problems in the teeth and jaws

      Otolaryngologist (o to lair in gol’ ah jist): An ear, nose and throat (ENT) doctor

      Pediatric (pee dee at’ rick) dentist: A dentist with advanced training to help children with special dental problems

      Prosthodontist (pros thah don’ tist): A dentist who makes and fits appliances and artificial teeth

      Psychologist (sy call’ a jist): A person with special training to help people with emotional or behavioral needs

      Social worker: A person who provides counseling and resources to people

      Speech/language pathologist (path ah’ lah jist): A therapist who helps people improve their speech

  • Family Reactions and Emotions

      Having a child with a cleft lip and/or cleft palate can stir many emotions and feel overwhelming. At first, it may be hard to accept that years of gradual treatment and progress lie ahead.

      Keep this in mind: The outlook is good. Advances are continually being made in the treatment of children with cleft lip and palate. Your child can reach adulthood with a good sense of self, an acceptable appearance and healthy social skills.

      Your ability to deal with your feelings is very important for your child's health. Your child will look to you for hope and strength. Your reaction will also set an example for other family members.

      Prepare to Care for Your Child

      - Take Care of Yourself

      As a parent, you are the most important person in your child's life, so you must stay healthy and strong. Maintain a healthy diet and try to exercise often. Take time to rest and relax each day. When you are relaxed, it is easier for your child to relax.

      - Ask for Help When You Need It

      You can't do it all. Ask family members and friends to lend a hand when they can. If you feel scared or unsure about your feelings, ask to speak to one of our staff at Children's right away. We can help you feel confident about caring for your child.

      Beware of Burnout

      Sometimes you might not know when your “battery” needs to charge. Watch for these signs in your life. If you notice any of these signs, you may need to get some rest and/or ask for help.

      - Constant fatigue

      - Constant depression

      - Desire to avoid others

      - Family arguments

      - Increased use of alcohol or drugs 

      - Play With Your Baby

      You and your baby can still enjoy the pleasures of cuddling, rocking, talking and playing. Babies (and parents) need these activities to develop bonds and satisfy their need for love, closeness and nurturing. Set aside time to enjoy your baby after feedings, baths and naps. Your smile, voice and touch are important to your child.

      - Set a Positive Example for Your Child

      Children can sense the feelings of the adults around them. Your child will develop his feelings about his cleft lip and/or cleft palate from your feelings and actions. If you dwell on problems and act ashamed, so will your child. But if you treat your child as a whole person with many positive features, he will have more self-confidence.

      Be Prepared for Teasing and Other Social Problems

      Do not shelter your child from other children to protect him. The more time he spends with other children, the sooner your child will learn to handle social situations. There are three points in time when this may be extra hard:

      - The first year in school, when a child goes outside the home and loses some “special” status

      - The onset of puberty, when a child is very aware of his body's changing appearance and an increased need to fit in socially

      - The later teens, when young people begin to desire more intimate relationships and to be seen as “special” by someone else 

      It may be helpful to role-play a teasing event at home to help a young child rehearse new ways to handle situations.

      Use Your Craniofacial Team as a Resource

      The Children’s Healthcare of Atlanta Craniofacial team can help you prepare for and deal with many of the situations you will face. Our trained and dedicated team members are available to provide:

      - A plan of care that is tailored for your child throughout the years

      - Education and updates on your child's condition and treatment schedule

      - Financial guidance

      - Emotional counseling and support

      Parent Support Group - our parent support group meets several times a year and offers an open forum to discuss challenges and concerns in helping your child with craniofacial differences.

      The Children’s Craniofacial team is always available to you. You may speak with us during your visits or call us from home. Do not be afraid to ask for any type of help you need. We want to help as much as we can.

      Reassure your Partner and Other Children

      - Communicate With Your Partner

      The birth of a baby can cause stress for a couple. It is easy for your relationship to become strained while you are both focused on your child. Parents need to talk and offer support to each other as often as possible. If you remember to share your feelings and listen to those of your partner, you can be each other's most valuable resource.

      - Siblings 

      Your child's care will affect every member of your family. At first, young siblings may be scared by the cleft lip and palate. Also, they may become jealous because they don't understand why you need to spend extra time with their new sibling. This is natural. Brothers and sisters need to be assured that they are also important to you. Remember to hold, comfort and love all your children - including your child with a cleft lip and/or cleft palate. Find time each day to spend with them.

      As you learn about cleft lip and palate and your child's treatment plan, make sure that your other children learn, too. Give them plenty of chances to ask questions, and let them help as much as they can. Older siblings may be able to help by baby-sitting younger siblings. All children can help by doing small chores around the house.

      Offer lots of praise when your children help you. Let them know that they are a valuable part of a team effort so they feel more important and independent. When you are confident about caring for your child, you may even include siblings in some care tasks.

  • Types of Clefts and Repairs

      cleft palate

      Unilateral complete cleft lip and palate

      bilateral complete

      Bilateral complete cleft lip and palate

       

       

       

       

      Types of Cleft Lips

      unilateral incomplete

      Unilateral incomplete

      cleft lip

      Unilateral complete

       

       

       

       

      Types of Cleft Palates

      bilateral incomplete

      Bilateral incomplete

      bilateral complete

      Bilateral complete

      incomplete

      Incomplete

      horseshoe palate

      Complete

  • Caring for Your Child's Teeth and Jaws

      A cleft palate often creates problems with the upper jaw and teeth. These problems can almost always be solved over time by treatment from a skilled pediatric dental team.

      Your child's pediatric dental team is an important part of the Children’s Healthcare of Atlanta Craniofacial team. Members of a pediatric dental team may include a pediatric dentist, an orthodontist, a prosthodontist, dental hygienists and assistants, and a craniofacial surgeon.

      Your child's pediatric dental team can take a number of steps (which may be spaced over years) to correct problems with your child's teeth and jaws.

      Common Problems

      - Poor Occlusion

      Occlusion is the way the upper and lower teeth fit together when the mouth is closed. A cleft palate may affect the size and shape of the upper jaw and cause a poor fit.

      - Altered Facial Appearance 

      The shape of your child's face may be affected by a cleft in his upper jaw. Such problems can be treated and corrected over time.

      Early or Late Appearance of Teeth 

      The teeth in the cleft area may appear earlier or later than the teeth around them. This is caused by how they are positioned in the jaw. These teeth may grow into a normal position. More often, however, they will need to be straightened.

      Missing, Extra and Poorly Formed Teeth 

      Like any other child, a child with a cleft palate may have a number of problems as teeth grow into the mouth. Poorly formed teeth are more likely to develop tooth decay. Your pediatric dentist will discuss all problems and review treatment options with you as needed.

      Oral Hygiene

      Teach your child about good oral hygiene as soon as possible. This means keeping the teeth and mouth clean. It begins when your child's first baby tooth appears, and it includes:

      - Brushing with a toothbrush and toothpaste at least twice each day

      - Using dental floss after meals to clean between teeth

      - Visiting the pediatric dentist twice each year for routine checkups and cleanings

      Oral hygiene can prevent many problems and help your child achieve the best possible results from treatment.

      Orthodontic Treatments

      Your child's orthodontist at Children's will perform different types of treatment as your child grows older.

      Newborns

      A baby with a cleft lip and palate may have trouble feeding. If the palate is split, food may escape through the nose. Also, an opening in the roof of the mouth can weaken a baby’s ability to suck.

      To correct such problems, your pediatric dentist or orthodontist can insert an obturator in your child’s mouth. This is a plastic device that fits over the roof of the mouth and acts as a palate. It helps babies create suction for feeding and prevents most food from escaping through the nose. A special dental paste is sometimes used to hold it in place.

      After an obturator is placed, your pediatric dentist or orthodontist will check it often and adjust it as needed. An obturator is worn until the cleft palate is surgically closed at about 6 to 9 months old.

      Your child’s upper lip may need to be "molded" to reduce stress on it. This is often done by stretching a piece of foam tape over the lip. Other devices may also be used for this. Your Craniofacial team will decide which type of molding is best for your child.

      Young Children

      Your dental team at Children’s will watch your child’s teeth develop for several years until it is time for the bone graft.

      - This is surgery to insert bone into the area of the cleft.

      - To prepare for the bone graft, the Craniofacial team will study X-rays, photographs and models of your child's mouth.

      - From these studies, the craniofacial team will make a treatment plan that is best for your child's needs.

      Quite often, a child's upper jaw must be expanded before a bone graft may be done. There are a number of devices for this. The pediatric dental team will explain the device that is best for your child.

      - An expansion device is usually worn for several months before the bone graft is done.

      - After the bone graft, the device is left in place as a "retainer" for several more months.

      - Your child may need to wear a retainer until the final phase of treatment is done during his mid-teens.

      Other treatments may also be needed at this time to correct your child's teeth and jaws. This phase of treatment can take up to a year and a half.

      Teenagers

      The final phase of treatment is usually begun after all adult teeth appear. The orthodontist will study X-rays, photographs and models of your child’s mouth. From these studies, the orthodontist will make a treatment plan that is best for your child’s needs.

      During this phase of treatment, your child will likely be fitted with braces. More expansion of the upper jaw may also be needed.

      If your child needs pediatric dental surgery, it will occur about one to one and a half years after braces are fitted. Braces will remain in place after surgery.

      If your child is missing teeth, the problem may be corrected with some type of implant. It depends on how many and which teeth are missing. Your pediatric dental team will discuss types of implants with you as needed.

      This phase of treatment often takes two to three years.

  • Hearing and the Ears

      Infants and young children have more ear infections than adults because their ears are different. Infants'eustachian tubes are shorter and more horizontal than adults' tubes, so fluid cannot drain out as easily. Whenfluid builds up in the middle ear, it often causes an infection and/or a hearing loss.

      A cleft palate may affect the structure of the upper throat and the eustachian tubes. Children with cleft palatesare therefore even more likely to have ear infections and other middle ear problems than most children.

      Even very mild hearing losses can cause big problems for young children, as they are just starting to learnspeech and language skills. Since children with a cleft lip and palate are at a higher risk, their hearing must bewatched very closely for any problems. Some doctors prefer to insert tubes in the ears of children with a cleftlip and palate to prevent problems before they occur.

      As a child with a cleft lip and palate grows older, ear problems tend to become less frequent and less severe.

      Common Tests

      There are a number of tests that help us prevent, locate and treat your child's ear problems. The audiologiston the Children’s Healthcare of Atlanta Craniofacial team will discuss your child's tests with you and tell youhow you can prepare your child for them.

      Here are some of the most common tests:

      - Tympanometry test: measures pressure in the middle ear and how the eardrum reacts to pressure changes. It can also find holes in the eardrum and show if tubes are working properly. This test may be done on newborns, but it works better for children who are at least 7 months old. It will not hurt.

      - Otoacoustic emissions (OAEs) test: records how the inner ear responds to sound. A series of tones are played through a small tip that is placed in the ear. The inner ear responds by emitting tones of its own. The test takes only a few minutes, and your child must remain still. It will not hurt.

      Auditory brainstem response (ABR) test: measures the response of the brainstem (the base of the brain) to sound. In an ABR, electrodes are placed on your child's forehead and behind his ears. Electrodes are soft pads that are connected to the ABR machine by covered wires. Electrodes will not hurt or shock your child. 

      A clicking signal is presented through the earphones, and a computer records the brainstem's response and measures the hearing level of each ear. The test takes up to an hour, and your child must remain completely still the whole time. Most children are given medicine to help them sleep during the test.

      Behavioral tests: measure hearing by the way that a person responds to sound. They can be done with children as young as 6 months old. There are many types of behavioral tests. The test your child has depends mostly on his age. 

      Your child may sit on your lap while sounds are played through speakers. When your child turns toward the sound, a toy moves above the speaker that made the sound. Your child may play a listening game such as dropping a block in a bucket when he hears a sound. Older children may wear earphones and raise their hands when they hear tones. A behavioral test requires your child's interest. If your child is fussy or distracted, it may take several sessions to complete a test.

      After your child's hearing is tested, your audiologist will discuss the results with you. He will also discuss treatment options with you and your Craniofacial team at Children's.

      If you have any questions about your child's ears, hearing or hearing tests, please feel free to ask your audiologist.

  • Neuropsychology for Your Child's Mental Growth

      The person on the Children’s Healthcare of Atlanta Craniofacial team who can help check your child’s cognitive (mental) growth is the neuropsychologist. While not all children with cleft lip and/or cleft palate have cognitive problems, some do experience developmental delays and learning problems.

      Screenings and Evaluations

      Your child may have a screening test to look for problems in mental, motor, social and behavioral growth. Screenings may begin when your child is a baby and continue into the teen years.

      If any problems are found, formal testing can be done to help find the type and extent of the problems. Tests can also point to ways to help your child do better in many areas.

      The test may look at how well your child:

      - Thinks through problems

      - Pays attention and finishes tasks

      - Learns and remembers information

      - Listens to speech sounds, identifies objects and uses words to communicate

      - Copies shapes and writes letters

      - Reads, writes and does math

      - Copes with emotions and makes friends

      - Follows directions and controls behavior

      - Works quickly and efficiently on tasks

      Formal testing is key to learning about your child’s cognitive strengths and weaknesses. It can also help your child do his best at home, at school and in the community.

  • Community Resources

      There are many groups that can help you care for your child. Your social worker can discuss these groups with you and help you contact them. They include:

      About Face USA
      P.O. Box 969
      Phone: 888-486-1209
      e-mail: info@aboutfaceusa.org

      This group provides support and guidance to people with facial differences. They also publish a newsletter and sponsor support groups. Call to find a local chapter.

      Children's Craniofacial Association
      13140 Coit Road, Suite 307
      Dallas, Texas 75240
      Phone: 800-535-3643
      Fax: 214-570-8811
      e-mail: contactCCA@ccakids.com

      This group provides information, a newsletter, parents' networks and an assistance fund for families who must travel for medical care.

      Children's Medical Services
      Georgia Division of Public Health
      2 Peachtree Street NW
      Atlanta, Georgia 30303-3186
      Phone: 404-657-2726
      e-mail: gdphinfo@dhr.state.ga.us

      This agency can help with the cost of medical treatment and equipment for needy patients and families.

      Families of Children Under Stress (FOCUS)
      3050 Presidential Drive, Suite 114
      Atlanta, Georgia 30340
      Phone: 770-234-9111
      e-mail: focus-ga@mindspring.com

      This is a support group for parents of very ill children. They provide a newsletter, a hotline number, monthly support meetings, annual conferences and family get-togethers.

      Cleft Palate Foundation
      104 South Estes Drive, Suite 204
      Chapel Hill, North Carolina 27514
      Phone: 919-933-9044
      e-mail: info@cleftline.org

      This is a nonprofit agency that provides information and doctor referrals to families.

      The Georgia Advocacy Office
      100 Crescent Centre Parkway, Suite 520
      Tucker, Georgia 30084
      Phone: 404-885-1234 or 800-537-2329
      e-mail: info@thegao.org

      This group provides information, training, referrals and legal advice and representation to people in Georgia with disabilities and mental illnesses. They work with families having problems with public school systems.

  • Financial Resources

      Because each child's needs are different, there is no way to know how much your child's treatment will cost.

      If your child is covered by private insurance, you must let them know about the cleft lip and palate and your visits to the Children’s Healthcare of Atlanta Center for Craniofacial Disorders. Our staff and your child's doctor's office will help you arrange payment for surgeries and other treatments. However, you must stay in close contact with your insurance company and keep up with records and bills.

      If your child is covered by Medicaid, you must stay in close contact with your case worker. When your case worker asks for information, provide it as soon as possible to prevent problems with your coverage.

      If your child is not covered by private insurance and is not eligible for Medicaid, please tell your social worker at Children's so he can help you apply for other types of financial help.

  • Social Workers: A Family Resource

      Having a child with a cleft lip and/or cleft palate can be a scary, confusing time. You may have many questions about:

      - What resources are available to your child and your family

      - What to expect during your hospital visits

      - How your child's care will be paid for

      The social worker on the Children’s Healthcare of Atlanta Craniofacial team can help you find the answers. The social worker's role is to:

      - Help you deal with your emotions and those of your child

      - Serve as a link between your family and the hospital

      - Direct you to support groups and other sources of information

      - Help you find and use any resources that are available to you

      During your first meeting with your social worker, he may ask you many questions about your family, lifestyle, job and finances. This is to help the social worker understand your needs and direct you to resources. Your social worker may contact agencies for you or explain how you can contact agencies on your own.

      Your social worker is always available to you. You may speak with him in person during your visits and call him between visits.

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