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SPOON Foundation Joint Council on International Children's Services

Cleft Lip and Palate

Cleft lip and cleft palate are birth defects that can affect the upper lip and the roof of the mouth.

Cleft Lip

In the case of cleft lip, a split is left in the tissue of the upper lip that can affect only the lip or extend beyond the lip as far as the nose. The cleft can be on one side of the lip (unilateral) or on both sides (bilateral).

Cleft Palate

In cleft palate, the growth plates that form the roof of the baby’s mouth fail to close, leaving a crack or opening. The cleft can occur in either the hard palate which is the bony roof of the mouth, the soft palate which is the soft tissue towards the back of the roof of the mouth, or both the hard and soft palates.

Cleft lip and cleft palate can occur separately or together.

Many adoptive parents from the United States are accustomed to seeing a repaired cleft lip or palate, which most often looks like a scar on the upper lip. And so, many adoptive parents are unprepared for a child with an uncorrected cleft lip or cleft palate.

» View an illustration from the Centers for Disease Control & Prevention (CDC) of a baby with a cleft lip.

» View an illustration from the CDC of a child with a cleft palate.

Complications

Problems that may be present because of a cleft lip or palate are:

Causes

There are many causes of cleft lip and palate, often a combination of genetic and environmental factors. A family history of cleft lip or palate, although not always present, can increase the chance of a baby being born with cleft lip and palate. Risk factors for cleft lip and palate include a mother’s exposure to viruses, toxic substances, environmental pollutants, and nutritional imbalances during pregnancy.

Cleft lip and palate may occur alone or in conjunction with other syndromes or birth defects.

About 1 out of 700-1000 people are born with cleft lip and/or cleft palate, making it one of the most common major birth defects. More boys than girls have a cleft lip, while more girls have cleft palate without a cleft lip. Clefts occur more often in children of Asian, Latino, or Native American descent.

Treatment

Ideally, children with cleft lip and/or palate should be followed from birth through adolescence by a craniofacial team who designs an individualized treatment plan. Post-adoption, a child’s care team might include a surgeon, a dentist, a speech-language pathologist, and a dietitian, among others.

Treatment can include the following:

Depending on the age of the child at adoption, parents may bring home a child at any given point in the treatment process. Download a recommended packing list for parents adopting children with cleft lip and/or cleft palate.

An adopted child’s surgery schedule may vary from the typical schedule based on several factors. First, the child’s country of origin may not have the financial resources to cover a child’s surgery costs while in institutional care. Secondly, other conditions or health problems (such as malnutrition) may prevent children from getting the treatment they need. Many charitable organizations exist to provide surgeries for children in need.

Feeding and Nutrition of Children with Cleft Lip and/or Palate

Babies and children with cleft lip and/or palate are at risk for feeding difficulties. As a result, they may not receive enough macro and macronutrients. They can quickly become malnourished.

Bottle Feeding

Potential Problems or Feeding Difficulties in Cleft Lip and/or Palate:

Potential Solutions:

Spoon-Feeding

Most likely, the child will be ready for spoon feeding before his cleft palate is repaired. Most children have little trouble adapting to spoon feeding. They may push the food out with their tongues, cough, or get a little food up their nose. Usually this period of adaptation is brief and with repeated tries, they will soon become proficient.

If the cleft is still open, the child may get a little food up his nose. He may sneeze the food out, swallow it down with the next bite, or need a little sip of fluid. If the nasal passages become noticeably clogged, give him a little water. If his nose is still blocked, gently suck the material out of each side with a bulb syringe and then rinse with a little water.

Surprisingly few children with cleft lip and palate have any long-term problems eating purees or table foods. If the child consistently rejects the idea of spoon feeding or cup drinking, he is probably not developmentally ready to take that step. Discontinue and try again in a few weeks.

After the palate is surgically repaired, any problems with mealtimes should decrease. Sometimes, a small hole called a fistula may remain or develop in the roof the mouth at the site of the original cleft. At times, food or liquid may come through or get lodged in the fistula. Most children become very adept at clearing any liquid or food particles on their own. If leaking or reflux through a fistula is fairly frequent or bothersome, be sure and discuss the situation with the child’s doctor to come up with a solution to the problem.

SPOON Foundation

3227 NW Thurman Street, Portland, OR 97210
info@spoonfoundation.org
http://www.spoonfoundation.org

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