Cleft Awareness Week May 7th-15th

Did you know 1 in 700 people are born with a cleft, according to CLAPA (Cleft Lip and Palate Association)? Some may be under the impression that there is only a genetic component to clefts, but the truth is, a cleft can result in any pregnancy with or without a related genetic condition or syndrome. While a cleft is not known to be painful, these facial differences can cause many challenges for children and their families.

Kaydee Boswell, NICU RN at Piedmont Henry, shares one of the main concerns with cleft lip/palate is feeding difficulties, saying “I think it is scary for parents to navigate. Whether it’s feeding a bottle and fearing they will choke and having to position correctly or needing a feeding tube which requires teaching and education.” Most children will require special bottles, feeding tools or a feeding tube to get the proper nutrition they need. Meaning that not all babies will be able to breastfeed or even bottle sufficiently.

One mom I spoke to in my own rare disease community, Vanesa Brown, whose son Karson was born with both a cleft lip and palate, used a special bottle, called a Haberman bottle, for feeding. She says it improved his feeding and put him at lesser risk of choking and aspiration because she was able to control the flow of the feeding. It also helped them avoid the need for a feeding tube.

Another challenge these children are faced with is speech and communication. Because a cleft palate causes a gap in the roof of the mouth, it can cause certain sounds to be muffled or hard to say. Speech therapy and surgery are two options for intervention, but even they may not always result in the desired outcome for the child and are often inaccessible due to financial constraints. 

One of the major myths about a cleft is that a single surgery will be sufficient. A cleft palate or lip repair may need to be done in several different surgeries and stages. These surgeries can include the lip and palate itself, along with the nose and jaw. These operations may help breathing, speech, and teeth growth. With long recovery times and lengthy waiting between staggered surgeries. 

CLAPA spoke very honestly about the challenges that can happen with self-image, 72% of adults born with cleft lips stated that it has affected their personal life. This is a great reminder to be kind regardless of differences.

How can you get involved with the Cleft community?

Visit Cleft Lip & Palate Association (clapa.com)

Additional writer note: My deepest apologies for the late blog entry but I definitely wanted to post this to bring Awareness. We are so thankful for Rena, for allowing us to share her beautiful pictures on our page!