According to the CDC, cleft lip/palate is the second most common birth defect–occurring in 1 in 575 live births. This happens when a baby’s upper lip or palate doesn’t form completely and has an opening in it. Left untreated, babies and children with cleft lip/palate may have severe dental, hearing problems, feeding problems, and/or speech problems. Because it affects speech and language development, dental development, and facial appearance, individuals with cleft have been recognized as a special needs population by the Maternal and Child Health Bureau.
Treating cleft involves a lengthy process of evaluations and treatment by a multidisciplinary team of specialists, typically starting during the first year of life and lasting up until early adulthood. Although the primary surgical interventions are usually completed during the first few years of life, complex evaluations and interventions to address tooth development, speech, and facial appearance continue on for several years.
We don’t know for sure what causes cleft lip and palate. However, they may be caused by a number of things including:
A family history of cleft lip and cleft palate
Smoking or drinking alcohol during pregnancy
Not getting enough nutrients, like folic acid, before and during pregnancy
Diabetes before pregnancy
Taking certain medicines, like anti-seizure medicines, during pregnancy
Being affected by obesity during pregnancy
Studies show that certain racial and ethnic groups experience disparities when it comes to treating cleft lip and cleft palate. For example, cleft palate repair rates are lower in Black/African-American, Hispanic, and Asian babies compared with White babies. Asian babies are significantly less likely to have timely surgical treatment for cleft conditions, while Black and Hispanic patients are more likely to experience complications during surgery that lead them to be readmitted to the hospital after surgery.
With treatment, most children with cleft do well and lead healthy lives, however treatment is costly. The number of interventions for individuals can vary from 3 or 4 to as many as 20+ surgeries before the affected individual reaches early adulthood. This can end up costing $100,000 per individual, which, for low-income families, can be a significant added challenge that may not be adequately addressed.
Although this issue is largely a result of flaws within the American healthcare system (which will likely not immediately be fixed), we can easily generate awareness about the inequalities of care that exist related to cleft lip/palate, as well as launch education initiatives within communities most affected by cleft (ex: Black and Asian communities) regarding safe practices for pregnant women in order to prevent the development of cleft lip/palate in their children.