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Frequently Asked Questions

Operation Smile Australia treats childhood facial deformities such as cleft lip, cleft palate and encephalocele.

Frequently Asked Questions About Encephaloceles

What is an Encephalocele?

An encephalocele is a neural tube defect of the nervous system. It is caused by limited failure of closure of the head end of the neural tube. There may be extension of the meninges or brain tissue through the skull.

When do they develop?

Encephaloceles develop during dorsal induction at 3 – 4 weeks post conception.

What causes encephalocele?

  • Environmental factors, maternal use of anti-convulsants, alcohol and drugs, maternal diabetes and obesity.
  • Vitamin B folic acid deficiency before and during pregnancy
  • Approximately 1 in 1000children born in Australia have a neural tube defect (encompassing encephalocele, myelomeningocele and anencephaly).

How does it affect the babies?

  • Seizure activity.
  • Developmental delay.
  • Hydrocephalus, meningitis, rhinorrhea.
  • Intellectual handicap.

How is it fixed?

If the encephalocele is small and a large amount of the brain is not contained in the sac, a combination of neuro and plastic surgery is required to close the deformity and repair the face

Frequently Asked Questions About Cleft Lips and Clefts Palates:

What is a cleft lip and cleft palate?

A cleft is an opening in the lip, the roof of the mouth or the soft tissue in the back of the mouth. A cleft lip may be accompanied by an opening in the bones of the upper jaw and/or the upper gum. A cleft palate occurs when the two sides of a palate do not join together, resulting in an opening in the roof of the mouth. A cleft lip and palate can occur on one side (unilateral) or both sides (bilateral). A child can suffer from a cleft lip, a cleft palate or both.

When do clefts develop?

Cleft lips and cleft palates are congenital defects that occur early in embryonic development. Clefts occur between the fourth and sixth weeks of pregnancy, as the facial structure of the fetus develops. If the bones do not connect correctly a cleft can develop.

What causes clefting?

The exact cause is unknown. Scientists believe a combination of genetic and environmental factors, such as drugs, infections, maternal illnesses, maternal smoking and alcohol use, malnutrition and possibly, deficiency of the B vitamin in folic acid may lead to a cleft lip or cleft palate. If one child in a family is born with a cleft, the risk increases by 2 to 4 percent that future children in the family will suffer from the same defect.

How frequently do cleft lips and cleft palates occur?

It is estimated that in the developing world, the number of babies born with this deformity is one in 500-600. This means that, assuming 15,000 children are born per hour worldwide¹, a child is born with a cleft somewhere in the world approximately every 2 ½ minutes.² More than 70% of babies with a cleft lip also have a cleft palate. Males are affected more frequently than females.

¹ United States Bureau of the Census, 2001
² World Health Organization; Report of WHO meetings on International Collaborative Research on Craniofacial Anomalies

Does a cleft lip or cleft palate cause problems for a child?

Ear disease and dental problems occur frequently, as do problems with proper speech development. Children who suffer from a cleft lip and/or cleft palate may have difficulty eating. To address these issues, a child and family may work with a team of specialists – a pediatrician, a plastic surgeon, dental specialists, an otolaryngologist (ear, nose and throat specialist), a speech-language pathologist, an audiologist (hearing specialist), a geneticist and a psychologist/social worker.

Can clefting be prevented?

Scientists are researching methods to prevent cleft lips and cleft palates, but little is known to date. According to a recent study, mothers who take multivitamins containing folic acid before conception and during the first two months of pregnancy may reduce their risk of giving birth to a baby with a cleft. Researchers have also found that maternal smoking increases the risk of clefts. Other studies suggest that high doses of vitamin A may play a role in some birth defects, including cleft lips and cleft palates; women should not take more than the U.S. Recommended Dietary Allowance of 5,000 international units of vitamin A.

Can cleft lips and cleft palates be repaired?

Yes. Surgery provides excellent results. A pediatrician and a plastic surgeon work with a child's parents to choose the best timing for surgery. Most surgeons agree that a cleft lip should be repaired by the time a baby is 3 months old. To repair the partition of mouth and nose as early as possible, a cleft palate generally is repaired between the ages of 12 and 18 months. Any surgical procedure is dependent upon a child's general health and the nature of the cleft lip or cleft palate.

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