No family is ever truly prepared to have their obstetrician tell them an ultrasound has revealed their unborn child has a birth defect. One family who heard this news recently asked ICTMN to look into how cleft lip and/or cleft palate affect the American Indian community.
What Is Cleft Lip/Cleft Palate?
Cleft lip and cleft palate, commonly called “orofacial clefts,” occur when a baby’s lip or mouth does not form properly during pregnancy. A cleft lip occurs when the tissue that makes up the lip does not join completely before birth, resulting in an opening in the upper lip, according to the Centers for Disease Control. A cleft palate occurs when the tissue that makes up the roof of the mouth does not join together completely before birth. A child may have a cleft lip alone, both a cleft lip and a cleft palate, or a cleft palate alone.
“With treatment, most children with orofacial clefts do well and lead a healthy life,” says the CDC.
How Often Do Orofacial Clefts Occur?
A 2007 study found that cleft lip occurs with or without cleft palate in about 1 out of 750 white births and cleft palate alone occurs in about 1 out of 2,500 white births. Cleft lip is more common in boys and cleft palate more common in girls. The CDC’s National Birth Defects Prevention Network recently estimated that about 7,000 babies in the U.S. are born with cleft lip and/or cleft palate every year.
An article in the American Journal of Medical Genetics states that a study conducted between 1983 and 1992 in California showed that American Indians have the highest total rate of the 18 major congenital birth defects of all racial/ethnic populations in the U.S., including the highest rate of cleft lip and/or cleft palate, itself one of the most common birth defects among babies born in the U.S, according to the CDC.
The California study is among those that have found the rate of cleft lip/cleft palate to be about twice as high for American Indian births, though why this is remains a mystery.
What Causes Cleft Lip/Cleft Palate?
The CDC writes, “The causes of orofacial clefts among most infants are unknown.” The CDC goes on to note that clefts are thought to be caused by “a combination of genes and other factors, such as things the mother comes in contact with in her environment, or what the mother eats or drinks, or certain medications she uses during pregnancy.”
Recent studies have shown a correlation between some specific factors and the occurrence of cleft lip/cleft palate.
The CDC reports recent research shows that women who smoke, those who have diabetes and those who are taking certain medications to treat epilepsy, such as topiramate or valproic acid, during the first trimester, are at greater risk of having a baby with a cleft lip and/or cleft palate. Other medications may affect the incidence of these and other birth defects.
That research also shows that the babies of women using opioids early in pregnancy had a higher risk of birth defects than did other babies and that thyroid disease increased the risk of having a baby with craniosynostosis. The use of alcohol and street drugs are also associated with birth defects.
The Indian Health Service notes that a recent British meta-analysis indicated that there is an increased risk of cleft lip/cleft palate (and several other congenital anomalies) in babies of women who are obese.
Research using data from the CDC’s National Birth Defects Prevention Study has found that a good quality diet in the year before pregnancy appeared to reduce the risk of birth defects, including cleft lip and cleft palate. Other anomalies that seem to be reduced by a good diet include conditions of the brain and spine, known as neural tube defects. The CDC recommends, “Women should try to maintain a healthy balanced diet before and during pregnancy.”
Cleft lip/cleft palate (and many other birth defects) are anomalies that occur very early in a pregnancy, often before a woman even knows she is pregnant. A cleft lip forms between the fourth and seventh week of gestation and a cleft palate between the sixth and ninth weeks. Therefore, doctors recommend that women who intend to get pregnant should try to eliminate the factors that are associated with a higher incidence of orofacial clefts and other birth defects before they try to conceive.
What Problems Can a Cleft Lip/Cleft Palate Cause?
A child with a cleft lip and/or cleft palate may experience difficulties with nursing, feeding or speech. The Cleft Palate Foundation notes that while babies with cleft palate may not be able to breastfeed, mothers may have the option of pumping breast milk and feeding it with a cleft palate nurser or other feeding system. A baby’s treatment team and pediatrician can help with feeding problems. Infants with cleft palates may also have frequent ear infections and/or hearing problems; their hearing should be tested early and frequently.
How are Orofacial Clefts Repaired?
Orofacial clefts are generally treated with surgery to repair the gap in the lip and/or palate. Cleft lip repair is usually performed at 6 to 12 weeks and cleft palate repair when the child is between 9 months and 1 year old. The surgery is done to improve the child’s appearance and to help with any breathing, hearing, and speech and language difficulties a child could have. The child may still need to see a dentist to correct their teeth as they come in or a speech therapist to help with any speech problems that arise.