Is Cleft Lip a Disability?

Cleft Lip and Normal Adulthood

Cleft lip is a common birth defect which can be repaired through surgery. New research also suggests that parents don’t need to worry about their children having long-term health problems.

This may not be true for children who have cleft palate, according to Norwegian researchers.

A cleft lip occurs when the tissue which forms the lip doesn't completely join prior to birth. This results in an opening in the upper lip. A cleft palate occurs when the tissue on the roof of the mouth does not fuse together during pregnancy.

Researchers found that babies who were born with cleft lip and/or cleft palate, were not at a greater risk for additional health issues or for early death. Infants who were born with a cleft palate alone, however, were found to have a slightly increased risk of premature death and of having other issues such as an intellectual disability, autism or a severe learning disability.

"These results are relatively good news for parents of children with cleft lip and cleft palate," said Dr. Erik Berg, who was the lead researcher at the University of Bergen.

One of the study’s limitations was the small sample size of patients who had a cleft palate and died early or had developmental issues. As a result, it is not possible to effectively determine the extent of the risk for any specific outcome. The study was only able to identify the association between a cleft palate and an increased risk of future problems.

Because cleft lip is easier to identify with a prenatal ultrasound before birth and a cleft palate usually can't be identified before delivery, the findings could be helpful when counseling parents of a fetus with a cleft lip detected during pregnancy.

Berg and his colleagues collected data from about 1.5 million births throughout Norway between 1967 and 1992 for the study. The study also included more than 2,000 babies who were born with oral clefts and were followed until 2010, when they were between 18 and 43 years old.

The final analysis included more than 2,300 babies who were born with clefts and more than 1.4 million infants who were not born with clefts.

One expert stated that there can a high level of variance in how cleft lip and cleft palate are treated due to the lack of established standards of care.

"Clefts of the lip and palate occur in one in 700 births," said Dr. Kelly Evans. Dr. Evans is an acting assistant professor in the department of pediatrics at the University of Washington in Seattle and co-wrote an editorial which accompanied the study.

Although clefts are common, there is minimal research on the best methods in caring for children born with clefts and the adults they become, Dr. Evans stated. As a result, the treatment for children with clefts can vary drastically from one hospital to another.

This study should help increase awareness of care for children with a cleft, Evans said. Health care professionals, researchers, patients and families need to continue working together to conduct research into the conditions, she added.

"Ultimately, such collaborations will pave the way to ensure that all individuals with clefts have access to optimal treatments to achieve the best outcomes possible throughout childhood and adulthood," Dr. Evans said.

Dr. Edward McCabe, the chief medical officer for the March of Dimes, said the study "should be reassuring to families in which an ultrasound picks up a cleft lip. It might be concerning to those with a cleft palate."  It is critical to be aware that there is a possibility of additional problems and early identification can help ensure children get the help they need, he said.

More on Cleft Lip - How to Fix Cleft Lip or Palate?