Cleft Lip & Palate

Did you know that cleft lip and/or cleft palate is one of the most common birth defects? Approximately 1 in 700 newborns, or over 7,000 children per year, are born with a cleft lip and/or palate in the U.S. To us cleft parents, that means we get to fall in love with not one, but two BEAUTIFUL smiles from the same child! But for a condition with such a common occurrence, it’s really quite surprising how little is understood about it. Here, we shed some light on facts about clefts that we encourage you to share with your friends and family to help raise awareness. Together, one person at a time, we can make a difference in ensuring clefts are better understood, and more importantly, better accepted!

What is a cleft lip and/or cleft palate?

A cleft lip is a split in the upper lip that can occur on one side (unilateral) or both sides (bilateral) of the center. The split may be complete (extends from the lip and all the way into the nose), incomplete (extends from the lip but not into the nose), or a notch (a small groove in the lip). A cleft lip may occur by itself or along with a cleft palate.

A cleft palate is an opening in the roof of the mouth that, like a cleft lip, can occur on one side (unilateral) or both sides (bilateral). The opening can affect the gumline, the hard palate, and/or the soft palate. A cleft palate may occur by itself or along with a cleft lip.

Because the lip and palate form very early in pregnancy (between the fourth and ninth weeks), if a cleft does occur, it happens well before the end of the first trimester.

What are the causes of cleft lip and/or cleft palate?

There is no known method to completely prevent cleft lip and palate from occurring. Some, but not all, clefts are genetic. And while there are some environmental factors that have been linked to clefts, for many parents, the cause of their child’s cleft remains unknown. That’s why at Cleftopedia we feel it’s important to push for and support research conducted by organizations such as the CDC to better understand the causes of and risks for clefts and other craniofacial differences. You can find more information on what is known about the causes of cleft lip and palate by visiting the CDC Website.

How do I feed my baby with a cleft lip and/or palate?

Typically, babies born with a cleft palate are unable to create the amount of suction needed to breastfeed or drink from a regular bottle. While some are fortunate to still be able to nurse, many require a special bottle to make up for their lack of suction. Luckily, there are several bottle options to choose from – these include the Medela SpecialNeeds Feeder (formerly the Haberman), the Pigeon nipple and bottle, the Dr. Brown’s Specialty Feeding System, and the Mead Johnson. You can find out more about each on Cleftopedia’s Special Feeder page, including videos on how to use them.  

How involved is the treatment for cleft lip and/or palate?

The initial surgeries to repair a cleft lip and palate typically occur within the first year or two of life. And while it’s true that advancements in surgical technique have come a long way, cleft lip and palate is not just a simple cosmetic repair. Besides physical appearance, it can also affect hearing, feeding, speech development, orthodontics and jaw growth, which can require numerous surgeries well into early adulthood.

We cleft moms and dads know the strength it takes to watch your child endure all of the various surgical procedures, and that’s why establishing a strong support system is so important! But fear not… remember that our children born with a cleft lip and/or palate can absolutely grow up to lead fulfilling, healthy, and otherwise typical lives! They may have been born with a cleft, but it does not define them and it’s up to us parents to ensure we never let it hold them back!

What is a Cleft Team?

Because children with clefts often require a variety of services that need to be provided in a coordinated manner, they typically receive treatment by a cleft and craniofacial team. These teams provide a coordinated approach to care, and often consist of a plastic surgeon, ENT, orthodontist, pediatric dentist, speech-language pathologist, nurse, social worker, audiologist, pediatrician, and a geneticist.

What are the presurgical techniques that surgeons may use to prepare for surgery?

There are several different techniques that a surgeon or cleft team may use in preparation for lip repair. These include the Nasoalveolar Molding Device (NAM), Latham, Taping, and Lip Adhesion. Each of these methods is intended to bring the lip and gums closer together. Alternatively, some surgeons may prefer no presurgical option. One method is not necessarily better than any other, and which one you choose will depend on several factors, including the type of cleft and the surgeon’s expertise. You can visit Cleftopedia’s Presurgical Techniques page to learn more about the pros and cons of each of these options, here from parents that have used them, and see examples of each.

How do I find out more information?

We are proud to offer a variety of ways for cleft parents to get the information you need… and remember, it’s always based on fellow cleft parent experiences! Be sure to stop by our Parent Tips page and our Blog to get all sorts of additional parent advice. You can find a list of some of our favorite cleft organizations on our Resources page! And if you can’t find what you’re looking for, please Contact Us for  help!!

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