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Why Are Some Babies Born With Cleft Lip

Cleft lip and palate is a congenital deformity, meaning it’s present at birth. It’s the most common craniofacial anomaly to affect newborns, and it affects up to 1 in 700 babies in the United States.

There are two main types of cleft lip and palate: unilateral and bilateral. Unilateral cleft lip and palate occurs when a baby is born with a gap on one side of his or her upper lip, but everything else looks normal. Bilateral cleft lip and palate occurs when there are gaps on both sides of the upper lip, as well as an opening in the roof of the mouth.

A cleft lip can also be caused by other conditions such as syndromes (which are genetically inherited diseases) or trauma from an accident during pregnancy.

In this article, we’ll consider what is cleft lip and cleft lip and palate causes.

Cleft lip and cleft palate are facial and oral malformations that occur very early in pregnancy, while the baby is developing inside the mother. Clefting results when there is not enough tissue in the mouth or lip area, and the tissue that is available does not join together properly.

A cleft lip is a physical split or separation of the two sides of the upper lip and appears as a narrow opening or gap in the skin of the upper lip. This separation often extends beyond the base of the nose and includes the bones of the upper jaw and/or upper gum.

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).

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 together.

Who Gets Cleft Lip and Cleft Palate?

Cleft lip, with or without cleft palate, affects one in 700 babies annually, and is the fourth most common birth defect in the U.S. Clefts occur more often in children of Asian, Latino, or Native American descent. Compared with girls, twice as many boys have a cleft lip, both with and without a cleft palate. However, compared with boys, twice as many girls have cleft palate without a cleft lip.

Cleft Lip And Palate Causes

In most cases, the cause of cleft lip and cleft palate is unknown. These conditions cannot be prevented. Most scientists believe clefts are due to a combination of genetic and environmental factors. There appears to be a greater chance of clefting in a newborn if a sibling, parent, or relative has had the problem.

Another potential cause may be related to a medication a mother may have taken during their pregnancy. Some drugs may cause cleft lip and cleft palate. Among them: anti-seizure/anticonvulsant drugs, acne drugs containing Accutane, and methotrexate, a drug commonly used for treating cancer, arthritis, and psoriasis.

Cleft lip and cleft palate may also occur as a result of exposure to viruses or chemicals while the fetus is developing in the womb.

In other situations, cleft lip and cleft palate may be part of another medical condition.

How Are Cleft Lip and Cleft Palate Diagnosed?

Because clefting causes very obvious physical changes, a cleft lip or cleft palate is easy to diagnose. Prenatal ultrasound can sometimes determine if a cleft exists in an unborn child. If the clefting has not been detected in an ultrasound prior to the baby’s birth, a physical exam of the mouth, nose, and palate confirms the presence of cleft lip or cleft palate after a child’s birth. Sometimes diagnostic testing may be conducted to determine or rule out the presence of other abnormalities.

What Problems Are Associated With Cleft Lip and/or Palate?

  • Eating problems. With a separation or opening in the palate, food and liquids can pass from the mouth back through the nose. Fortunately, specially designed baby bottles and nipples that help keep fluids flowing downward toward the stomach are available. Children with a cleft palate may need to wear a man-made palate to help them eat properly and ensure that they are receiving adequate nutrition until surgical treatment is provided.
  • Ear infections/hearing loss. Children with cleft palate are at increased risk of ear infections since they are more prone to fluid build-up in the middle ear. If left untreated, ear infections can cause hearing loss. To prevent this from happening, children with cleft palate usually need special tubes placed in the eardrums to aid fluid drainage, and their hearing needs to be checked once a year.
  • Speech problems. Children with cleft lip or cleft palate may also have trouble speaking. These children’s voices don’t carry well, the voice may take on a nasal sound, and the speech may be difficult to understand. Not all children have these problems and surgery may fix these problems entirely for some. For others, a special doctor, called speech pathologist, will work with the child to resolve speech difficulties.
  • Dental Problems. Children with clefts are more prone to a larger than average number of cavities and often have missing, extra, malformed, or displaced teeth requiring dental and orthodontic treatments. In addition, children with cleft palate often have an alveolar ridge defect. The alveolus is the bony upper gum that contains teeth. A defect in the alveolus can (1) displace, tip, or rotate permanent teeth, (2) prevent permanent teeth from appearing, and (3) prevent the alveolar ridge from forming. These problems can usually be repaired through oral surgery.

Who Treats Children With Cleft Lip and/or Palate?

Due to the number of oral health and medical problems associated with a cleft lip or cleft palate, a team of doctors and other specialists is usually involved in the care of these children. Members of a cleft lip and palate team typically include:

  • Plastic surgeon to evaluate and perform necessary surgeries on the lip and/or palate
  • An otolaryngologist (an ear, nose, and throat doctor) to evaluate hearing problems and consider treatment options for hearing problems
  • An oral surgeon to reposition segments of the upper jaw when needed, to improve function and appearance and to repair the cleft of the gum
  • An orthodontist to straighten and reposition teeth
  • A dentist to perform routine dental care
  • A prosthodontist to make artificial teeth and dental appliances to improve the appearance and to meet functional requirements for eating and speaking
  • A speech pathologist to assess speech and feeding problems
  • A speech therapist to work with the child to improve speech
  • An audiologist (a specialist in communication disorders stemming from a hearing impairment); to assess and monitor hearing
  • A nurse coordinator to provide ongoing supervision of the child’s health
  • A social worker/psychologist to support the family and assess any adjustment problems
  • A geneticist to help parents and adult patients understand the chances of having more children with these conditions

The health care team works together to develop a plan of care to meet the individual needs of each patient. Treatment usually begins in infancy and often continues through early adulthood.

What’s the Treatment for Cleft Lip and Cleft Palate?

A cleft lip may require one or two surgeries depending on the extent of the repair needed. The initial surgery is usually performed by the time a baby is 3 months old.

Repair of a cleft palate often requires multiple surgeries over the course of 18 years. The first surgery to repair the palate usually occurs when the baby is between 6 and 12 months old. The initial surgery creates a functional palate, reduces the chances that fluid will develop in the middle ears, and aids in the proper development of the teeth and facial bones.

Children with a cleft palate may also need a bone graft when they are about 8 years old to fill in the upper gum line so that it can support permanent teeth and stabilize the upper jaw. About 20% of children with a cleft palate require further surgeries to help improve their speech.

Once the permanent teeth grow in, braces are often needed to straighten the teeth.

Additional surgeries may be performed to improve the appearance of the lip and nose, close openings between the mouth and nose, help breathing, and stabilize and realign the jaw. Final repairs of the scars left by the initial surgery will probably not be performed until adolescence, when the facial structure is more fully developed.

What Is the Outlook for Children With Cleft Lip and/or Cleft Palate?

Although treatment for a cleft lip and/or cleft palate may extend over several years and require several surgeries depending upon the involvement, most children affected by this condition can achieve normal appearance, speech, and eating.

Dental Care for Children With Cleft Lips and/or Palates

Generally, the preventive and restorative dental care needs of children with clefts are the same as for other children. However, children with cleft lip and cleft palate may have special problems related to missing, malformed, or malpositioned teeth that require close monitoring.

  • Early dental care. Like other children, children born with cleft lip and cleft palate require proper cleaning, good nutrition, and fluoride treatment in order to have healthy teeth. Appropriate cleaning with a small, soft-bristled toothbrush should begin as soon as teeth erupt. If a soft children’s toothbrush will not adequately clean the teeth because of the modified shape of the mouth and teeth, a toothette may be recommended by your dentist. A toothette is a soft, mouthwash-containing sponge on a handle that’s used to swab teeth. Many dentists recommend that the first dental visit be scheduled at about 1 year of age or even earlier if there are special dental problems. Routine dental care can begin around 1 year of age.
  • Orthodontic care. A first orthodontic appointment may be scheduled before the child has any teeth. The purpose of this appointment is to assess facial growth, especially jaw development. After teeth erupt, an orthodontist can further assess a child’s short and long-term dental needs. After the permanent teeth erupt, orthodontic treatment can be applied to align the teeth.
  • Prosthodontic care. A prosthodontist is a member of the cleft palate team. They may make a dental bridge to replace missing teeth or make special appliances called “speech bulbs” or “palatal lifts” to help close the nose from the mouth so that speech sounds more normal. The prosthodontist coordinates treatment with the oral or plastic surgeon and with the speech pathologist.

Cleft Lip Treatment

Children with a cleft lip or palate will need several treatments and assessments as they grow up.

A cleft is usually treated with surgery. Other treatments, such as speech therapy and dental care, may also be needed.

Your child will be cared for by a specialist cleft team at an NHS cleft centre.

Your child’s care plan

Children with clefts will have a care plan tailored to meet their individual needs. A typical care plan timetable for cleft lip and palate is:

  • birth to 6 weeks – feeding assistance, support for parents, hearing tests and paediatric assessment
  • 3 to 6 months – surgery to repair a cleft lip
  • 6 to 12 months – surgery to repair a cleft palate
  • 18 months – speech assessment
  • 3 years – speech assessment
  • 5 years – speech assessment
  • 8 to 12 years – bone graft to repair a cleft in the gum area
  • 12 to 15 years – orthodontic treatment and monitoring jaw growth

Your child will also need to attend regular outpatient appointments at a cleft centre so their condition can be monitored closely and any problems can be dealt with.

These will usually be recommended until they’re around 21 years of age, when they’re likely to have stopped growing.

Surgery

Lip repair surgery

Lip repair surgery is usually done when your baby is around 3 months old.

Pictures of cleft repair treatment

Your baby will be given a general anaesthetic (where they’re unconscious) and the cleft lip will be repaired and closed with stitches.

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.

Your child will have a slight scar, but the surgeon will try to line up the scar with the natural lines of the lip, to make it less noticeable. It should fade and become less obvious over time.

Palate repair surgery

Palate repair surgery is usually done when your baby is 6 to 12 months old.

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.

The operation usually takes about 2 hours and is done using a general anaesthetic. Most children are in hospital for 1 to 3 days, and again arrangements may be made for you to stay with them.

The scar from palate repair will be inside the mouth.

Additional surgery

In some cases, additional surgery may be needed at a later stage to:

  • repair a cleft in the gum using a piece of bone (a bone graft) – usually done at around 8 to 12 years of age
  • improve the appearance and function of the lips and palate – this may be necessary if the original surgery did not heal well or there are ongoing speech problems
  • improve the shape of the nose (rhinoplasty)
  • improve the appearance of the jaw – some children born with a cleft lip or palate may have a small or “set-back” lower jaw

Feeding help and advice

Many babies with a cleft palate have problems breastfeeding because of the gap in the roof of their mouth.

They may struggle to form a seal with their mouth – so they may take in a lot of air and milk may come out of their nose. They may also struggle to put on weight during their first few months.

A specialist cleft nurse can advise on positioning, alternative feeding methods and weaning if necessary.

If breastfeeding is not possible, they may suggest expressing your breast milk into a flexible bottle that is designed for babies with a cleft palate.

Very occasionally, it may be necessary for your baby to be fed through a tube placed into their nose until surgery is carried out.

Treating hearing problems

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.

Speech and language therapy

Repairing a cleft palate will significantly reduce the chance of speech problems, but in some cases, children with a repaired cleft palate still need speech therapy.

A speech and language therapist (SLT) will assess of your child’s speech several times as they get older.

If there are any problems, they may recommend further assessment of how the palate is working and/or work with you to help your child develop clear speech. They may refer you to community SLT services near your home.

The SLT will continue to monitor your child’s speech until they are fully grown and they will work with your child for as long as they need assistance.

Further corrective surgery may sometimes be required for a small number of children who have increased airflow through their nose when they’re speaking, resulting in nasal-sounding speech.

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