Cleft Lip and Palate Awareness Week 2021

May 8-16, 2021 is Cleft Lip and Palate Awareness Week. This week provides a great opportunity to celebrate our differences and to educate those who do not have knowledge of this particular medical issue and raise awareness and understanding of what all is affected by cleft lip and/or cleft palate. Each individual born with a form of cleft has a different story to tell!

Although you have likely met someone with a cleft of some sort, you might not have even noticed or been aware. Technology and repair techniques have come so far over the years that often, repairs are undetectable. Unless you have known someone personally who was born with a cleft lip and/or palate, you also likely don’t know much about the condition or what all it can affect – that’s where this blog post comes in!

When my daughter Hudsyn was born in September of 2016, I didn’t have a clue what a cleft lip or cleft palate were, much less what all could be affected by the presence of one or both of these. Often, clefts are detected prior to birth, giving parents time to find appropriate doctors, get necessary feeding supplies, etc. We were, however, unaware Hudsyn would be born with a cleft lip and cleft palate. Although it would not have changed anything regarding her actual birth, it would have been nice to be a little more prepared for the days to come.

So, what is a cleft lip or cleft palate? A cleft lip is a separation between two sides of the upper lip that creates a narrow opening or gap. A cleft palate is similar, but occurs in the roof of the mouth (the palate). Some babies are born with only one or the other but in half of all cases, they occur together.

People often assume that cleft lip and/or cleft palate are simply cosmetic conditions; however, this could not be farther from the truth. While physical appearance is obviously affected, the presence of a cleft lip or cleft palate affects so much more than this. Feeding, hearing, ear development, speech, orthodontics, and jaw growth are just some of the things affected. Individuals born with a cleft lip and/or cleft palate often require multiple surgeries throughout their lives, often well into their young adult years.

Feeding is often difficult for cleft affected babies as they are unable to create the suction needed to breast or bottle feed. Special feeding systems aid in this but it usually requires some trial and error to figure out what will work for each individual baby. Often, even if they are able to figure it out, they are using so much energy in order to eat that they fail to gain weight or grow. We used the Dr. Brown’s specialty feeing system with Hudsyn which uses a small “Infant Paced Valve” that fits into the nipple of the bottle and allows milk to flow more freely and at the baby’s pace.

Hearing may also be affected by the presence of a cleft because the palate muscles are connected to the eustachian system. These muscles typically form differently in cleft affected individuals and don’t drain as efficiently as those of non-cleft affected people. Hearing affects so many areas of our lives we often do not even consider. Speech, for example, is largely dependent on hearing. In their young years, before the palate muscles have been repaired, cleft affected individuals may struggle with speech as a result of their diminished hearing among other things. Some sounds are more difficult to make than others. Sounds that require a build up of pressure, such as the b, p, t, and d sounds are often difficult for cleft affected individuals to make as the soft palate is unable to rise to touch the back of the throat. Other sounds that have proven to be difficult are the s and z sounds because the tongue is to be placed behind the top gum line to create them. In Hudsyn’s case, these have presented quite a challenge as she still has a small fistula and gum-line notch. This means air is still able to escape when she attempts to make these sounds. I have been SO proud of her hard work at speech over the last year, and she has nearly mastered all of the above listed sounds. She still gets lazy sometimes and forgets to make the correct sounds, but when reminded she can correct herself quickly. I wasn’t sure she would make these sounds until well after her bone graft surgery to close both the fistula and gum notch around age 8. She is a rockstar!

Here are a few other common misconceptions about clefts:
– Cleft affected individuals are also affected cognitively
FALSE: Craniofacial Clefts purely affect the face and sometimes head. Although some cleft affected individuals have also been diagnosed with various syndromes, etc – this is not always the case and usually cannot be directly tied to the cleft.

– Clefts form due to something the parent did incorrectly during pregnancy
FALSE: The cause is unknown, but is thought to be a combination of genetic and environmental factors.

-Only children in the developing world are born with clefts
FALSE: Cleft affected babies are born everywhere – and it is estimated that more than 170,000 babies are born with various forms of craniofacial clefts each year.

Also, did you know?
Cleft is one of the most common birth defects according to the CDC
Cleft lip is more common in boys than girls, but isolated cleft palate is more common in girls.
African American babies are less likely to be born with a cleft than other ethnic groups with a 1 in 2,000 chance.
Asian-American babies have a likelihood of 1 in 500 to be born with a cleft.
Caucasian babies have a likelihood of 1 in 700 to be born with a cleft.

Despite some of the complications sometimes associated with cleft lip and cleft palate, most children grow up to lead normal lives. It is so crazy to look back over the last 4 1/2 years and see how far our sweet, spunky, feisty, determined girl has come. She is so happy and takes everything in stride and we cannot wait to see what she accomplishes next.

Check out this video to see how much she has grown and changed since birth!