May 4-7, 2019 is Cleft Lip and Palate Awareness Week. There are so many misconceptions about individuals born with cleft lip and/or palate and this week is to help those who do not have knowledge of this particular medical issue to understand a little better what all is affected by cleft lip and palate. When we began this journey in September of 2016 I didn’t know a single thing about cleft lip and/or palate. I had maybe seen one or two people who were affected by it, but honestly didn’t even know exactly what it was.

One of the most common misconceptions is that this is simply a cosmetic issue. This could not be farther from the truth. So many things are affected by cleft lip and palate including but not limited to feeding, hearing, speech, orthodontics, and jaw growth. Yes, physical appearance is definitely affected, but there is so much more to it than that. Often, individuals born with a cleft lip and/or palate require numerous surgeries well into early adulthood. Hudsyn has done well with each of the 4 surgeries she has had, but continue to have some trouble with her ears. She gets ear infections easily and they are difficult to get rid of. She has done extremely well with eating and doesn’t seem to have trouble with anything except chocolate anymore. Every single time she eats chocolate, some of it comes out of her nose. I don’t know if it is becuase of the weight or consistency of chocolate or what, but it never fails! And this girl LOVES chocolate, so it happens quite frequently!
Clefts are one of the most common birth defects in the United States. According to the CDC, about 7,000 babies are born with a cleft lip and/or palate in the United States. Most cases are believed to be caused by an interaction of genetic and environmental factors and for most babies, a cause is never truly known.
Another misconception commonly associated with cleft lip and palate is that affected inviduals have learning difficulties. There are a number of syndromes that can be associated with cleft lip and palate, but the presence of cleft lip and palate does not ensure the presence one or more of these syndromes.
People also often assume that only children in the developing world are born with cleft lip(s) and/or palate(s). This is clearly not the case. Children born throughout the world are affected by either a cleft lip, palate, or both. However, great strides have been made in the repair techniques used in the United States, leaving affected individuals with nearly unnoticeable scars. Many doctors from the United States volunteer their time to perform surgical repairs in developing countries; however, the equipment and resources are typically nowhere near the same as they are here. Often, the results of surgeries performed in other countries are not as flawless as those performed in the United  States simply due to the facilities and resources.
Interestingly, African-American babies are less likely to be born with a cleft lip and/or palate than other ethnic groups. Because ethnicity plays a role in the risk of being born with cleft lip and or palate, African-American babies have a 1 in 2,000 chance of being affected by either a cleft lip, cleft palate, or both, while Asian-Americans have a likelihood of 1 in 500. The likelihood for Caucasian babies to be born with one, the other, or both is 1 in 700. Also, boys of all races are about twice as likely to be affected as girls.
Cleft lip and cleft palate occur together in one half of all cases. Cleft lip is a separation between two sides of the upper lip that creates a narrowing or gap. Cleft palate is similar, but occurs in the roof of the mouth (also known as the palate). Some babies are born with only one or the other, but in half of all cases, they occur together.
Despite the complications often associated with cleft lip and/or palate, most children grow up to lead perfectly normal lives. Sometimes when I look back over our journey I am overwhelmed with what is to come and what all she has had to endure. However, I am confident that she was hand picked by God and he has a wonderful plan for her life. I cannot wait to see what it is!