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  • What is a cleft lip?
    The lip forms between the fourth and seventh weeks of pregnancy. As a baby develops in the womb, body tissue and special cells from each side of the head grow toward the center of the face and fuse together to make the face. This joining of tissue forms the facial features, like the lips and mouth. A cleft lip happens when the lip tissue does not join completely before birth, which results in a cleft or split in the upper lip. The opening in the lip can be a small (incomplete) or large opening that goes through the lip into the nose (complete). A cleft lip can be on one or both sides of the lip. Another type is called midline, which occurs in the middle of the lip. Clefts have many variations and children with a cleft lip can also have a cleft palate.​
  • What is a cleft palate?
    The roof of the mouth (palate) is formed between the sixth and ninth week of pregnancy. A cleft palate happens if the tissue that makes up the roof of the mouth does not fuse together completely. For some babies, both the hard (where teeth are) and soft (by the uvula) palate is cleft. For others, only part of the palate is open.
  • Can someone have a cleft lip and not a cleft palate?
    The severity of a cleft lip and palate can vary. A baby can be born with just a cleft lip, just a cleft palate, or both a cleft lip and cleft palate. The clefts are classified as unilateral or bilateral. A unilateral cleft lip or palate affects just one side of the mouth. A bilateral cleft lip or palate affects both sides of the mouth.
  • What causes a cleft?
    Any one of a variety of factors can come into play to determine if a baby is born with a cleft lip or cleft palate. In most instances, it is a combination of many factors acting together that result in a cleft lip or palate. However, there are instances, due to a more comprehensive genetic syndrome, that often includes other birth defects. The geneticist evaluates every new patient to determine if the cleft is isolated or part of an underlying syndrome. In most cases, a cleft lip with or without cleft palate as well as isolated cleft palate occur alone and are believed to be due to multifactorial causation. Multifactorial causation involves both genetic and non-genetic factors. This is not due to a single gene abnormality, but rather many genes working together along with other factors. Although cleft lip with or without cleft palate can occur in any race, there is a higher incidence in people of Asian, Native American, or Hispanic decent. There is a lower incidence in African-American individuals.
  • How early in pregnancy can I find out my child has a cleft?
    Clefts can be diagnosed during pregnancy in a routine ultrasound. They can also be diagnosed after the baby is born, especially cleft palate, submucous cleft, or laryngeal cleft.
  • How often is a baby born with a cleft?
    A cleft occurs in 1 in every 600 births in the world and 1 in every 700 births in the United States. Cleft lip and cleft palate is one the most common birth defect in the United States.
  • What can be done to help our baby?
    The goal of surgery on a cleft lip is restoring normal function to the upper lip. It is usually performed between three to four months after the baby is born. The tissue in the area adjacent to the cleft is rearranged to close the opening. An important part of the surgery involves detaching and repositioning the muscle of the lip to recreate the circular muscle around the mouth. In this surgery, your child’s surgeon will improve the appearance of the nose if the cleft is complete. Palate repair is typically performed on babies between 6 and 18 months of age. One of the goals of repairing the cleft palate is to avoid abnormal speech development, which is why the surgery is performed prior to the child developing many speech skills. This surgery helps with eating and drinking in addition to correcting anatomy to make proper speech sounds. Many children will need additional surgeries as they age and their faces change. Surgeons can revise previous cleft lip repairs improving the appearance of scars. An otolaryngologist can place ear tubes in your child’s ears to improve hearing and prevent fluid from building up in the inner ear, which helps with speech as well. Revisions are also done on a previously cleft palate if speech is affected. Children born with a cleft palate might need additional types of treatments and services, such as a dental appliance, orthodontic care, and/or speech therapy.
  • Can a cleft cause other health problems?
    Babies with just a cleft lip typically do not have feeding problems. However, when the palate is involved, feeding can be a bigger challenge. Normally, the palate prevents food and liquids from entering the nose. A cleft palate causes babies to swallow a lot of air and regurgitate food into or out the nose. It also prevents babies from being able to latch and suck during breastfeeding and/or bottle-feeding. As a result, a baby with a cleft palate will need a special nipple and bottle to receive pumped breast milk or formula. Parents and/or caregivers should reach out to their child’s cleft team regarding feeding. Babies with feeding issues are prone to losing weight and may need adjustments made to what they’re eating and/or how they’re eating it. A pediatrician should see them regularly. Many children with cleft palate are at risk for fluid buildup in the middle ear. This fluid can't pass through the eustachian tube as it normally should, which leads to ear infections and potential hearing loss. Babies with cleft palate typically need ear tubes placed to help drain fluid and improve hearing. Children born with cleft palate should have their ears and hearing checked once or twice a year, and possibly more if they are having hearing problems. Children with a cleft lip and palate often have dental problems. These can include small teeth, missing teeth, extra teeth (called supernumerary), or teeth that are out of position. They may also have a gap in the gums or alveolar ridge (the bone that supports the teeth). Ridge defects can displace, tip, or rotate permanent teeth or prevent permanent teeth from coming in properly. When the child is between the ages of eight and ten, an oral surgeon does a bone graft so permanent teeth can come through the gap. Regular visits with a pediatric dentist/orthodontist who specializes in cleft lip and palate are important. They will check a child's mouth growth and development, identify any problems, and advise you on what treatments are needed. It is not uncommon for children born with cleft palate to have speech problems after surgical repair. Velopharyngeal insuffiency (VPI) occurs 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 is common and a good example of it sounds like the child is speaking with their nose plugged and when the nose is physically plugged, their speech sounds improve.
  • Will our baby have trouble learning to talk?
    Typically, babies born with an isolated cleft lip are not at increased risk for speech problems compared to other children without a cleft. When a baby is born with a cleft palate, there is an increased risk for speech and language difficulty. Because there is an opening in the roof of their mouth (the hard and/or soft palate), the baby’s early speech sounds and noises may sound different. In some cases, babies will naturally use glottal stops, which is a grunting sound produced by bringing the vocal cords together and then releasing them suddenly. A glottal stop can be used as a substitution or compensation when normal anatomy in the mouth hasn’t occurred. Babies with a cleft palate may show early delays in babbling or making different sounds before palate repair surgery. After palate repair, some babies will begin to “catch up” with their speech skills without special instruction. However, it is very common to require the help of a speech pathologist to ensure they make appropriate progress with developing their vocabulary and articulation (pronunciation) skills.
  • Will our baby be developmentally disabled?
    Most children with isolated cleft lip and/or palate will not demonstrate delays in the area of motor and cognitive (problem solving) skills; however, they are at risk for speech-language delays. School age children with repaired cleft lip and/or palate have shown to have an increase in reading and language-based disabilities so close monitoring is recommended. Children born with cleft lip and/or palate as part of a syndrome tend to have a higher risk for developmental delay.
  • What is a craniofacial team?
    Cleft and craniofacial teams provide a coordinated approach to care for children with cleft and craniofacial anomalies. These teams usually consist of experienced and qualified physicians and health care providers from different specialties. Cleft and craniofacial teams are located throughout the United States and other countries. A team consists of: Audiologist Dentist Orthodontist Geneticist Team Coordinator Speech-language pathologist Plastic surgeon Otolaryngologist A social worker Psychologist/therapist Oral surgeon
  • Where can I find emotional support?
    We want every single child with a cleft, parent of a cleft affected child, or a teenager/adult who has walked this journey to feel supported and loved! You can connect and build relationships with others in the cleft and craniofacial community on our Facebook and/or Instagram pages.
  • I still have unanswered questions, where can I get them answered?"
    We would love to help! Please use the Contact Us link under the About us section to reach one of our support members and we will do our best to answer any questions you may have!
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