CleftProud

What is a Cleft Lip?

The lip forms between the fourth and seventh weeks of pregnancy. As a baby develops during pregnancy, body tissue and special cells from each side of the head grow toward the center of the face and join together to make the face. This joining of tissue forms the facial features, like the lips and mouth. A cleft lip happens if the tissue that makes up the lip does not join completely before birth. This results in an opening in the upper lip. The opening in the lip can be a small slit or it can be a large opening that goes through the lip into the nose. A cleft lip can be on one or both sides of the lip or in the middle of the lip, which occurs very rarely. Children with a cleft lip also can have a cleft palate.​

What is a Cleft Palate?

The roof of the mouth (palate) is formed between the sixth and ninth weeks of pregnancy. A cleft palate happens if the tissue that makes up the roof of the mouth does not join together completely during pregnancy. For some babies, both the front and back parts of the palate are open. For other babies, only part of the palate is open.

Can someone have a Cleft Lip and not a Cleft Palate?

Yes! Babies can have a Cleft Lip without a Cleft Palate and can also have a Cleft Palate without a Cleft Lip.

What causes a Cleft?

The causes of a cleft lip and palate among most infants are unknown. Some children have a cleft lip or cleft palate because of changes in their genes. Cleft lip and cleft palate are thought to be caused by a combination of genes and other factors, such as things the mother comes in contact with in her environment, or what the mother eats or drinks, or certain medications she uses during pregnancy. Recent studies have shown that mothers who smoke, have diabetes or use certain medicines have an increased chance of having a baby with a Cleft lip and palate.

How early in pregnancy can I find out that my child has a Cleft?

Orofacial clefts, especially cleft lip with or without cleft palate, can be diagnosed during pregnancy by a routine ultrasound. They can also be diagnosed after the baby is born, especially cleft palate. However, sometimes certain types of cleft palate (for example, submucous cleft palate and bifid uvula) might not be diagnosed until later in life.

How often is a baby born with a Cleft?

1 in every 600 births in the world and 1 in every 700 births in the United States. Cleft Lip and Palate is actually the most common birth defect in the United States.

How many surgeries are needed to correct a Cleft?

Services and treatment for children with orofacial clefts can vary depending on the severity of the cleft; the child’s age and needs; and the presence of associated syndromes or other birth defects, or both. Surgery to repair a cleft lip usually occurs in the first few months of life and is recommended within the first 12 months of life. Surgery to repair a cleft palate is recommended within the first 18 months of life or earlier if possible. Many children will need additional surgical procedures as they get older. Surgical repair can improve the look and appearance of a child’s face and might also improve breathing, hearing, and speech and language development. Children born with a cleft lip and/or palate might need other types of treatments and services, such as special dental or orthodontic care or speech therapy.

Can a Cleft cause other health problems?

Yes. Babies with just a cleft lip don't usually have feeding problems. But when the palate is involved, feeding can be a bigger challenge. Normally, the palate prevents food and liquids from entering the nose. A cleft palate causes babies to swallow a lot of air and regurgitate food into the nose. It also makes it harder for babies to latch on and suck during breastfeeding or bottle feeding. As a result, a baby with a cleft palate may need a special nipple and bottle to receive pumped breast milk or formula. Breastfeeding moms might want to talk with a lactation consultant, who can offer more guidance and suggestions. Babies with feeding issues should be seen regularly by a doctor to make sure that they're gaining weight well. Many children with cleft palate are at risk for fluid buildup in the middle ear. This fluid can't pass through the Eustachian tube as it should, which can lead to ear infections and even hearing loss. So kids with cleft palate usually need ear tubes placed in their eardrums to help drain the fluid and improve hearing. Kids with cleft palate should have their ears and hearing checked once or twice a year, or more if they are having hearing problems. Children with a cleft lip and palate often have dental problems. These can include small teeth, missing teeth, extra teeth (called supernumerary), or teeth that are out of position. They may have a defect in the gums or alveolar ridge (the bone that supports the teeth). Ridge defects can displace, tip, or rotate permanent teeth or prevent permanent teeth from coming in properly. Regular visits with a pediatric dentist who specializes in cleft lip and palate are important. The dentist will check a child's mouth growth and development, identify any problems, and make treatments when needed. Kids with cleft lip have fewer speech problems than those with cleft palate. About 1 in 5 kids with cleft palate have speech problems after surgical repair. Most often, this means that a child's voice is hypernasal (sounding like the child is talking through the nose). This happens because the palate doesn't move well enough to prevent air from leaking out of the nose.

What is a craniofacial team?

Cleft and craniofacial teams provide a coordinated approach to care for children with orofacial clefts. These teams usually consist of experienced and qualified physicians and health care providers from different specialties. Cleft and craniofacial teams and centers are located throughout the United States and other countries.

Who can I speak with to set up an appointment with myself or my child about my/their Cleft?

Your local craniofacial team! You can locate the nearest one here: Find Your Craniofacial Team

Who can I speak with to set up an appointment with myself or my child about my/their Cleft if I am outside of the United States?

There are craniofacial teams outside of the United States too! Click here to Find Your Craniofacial Team! If there is not a team near you or you are unable to afford surgery, please contact Smile Train or Operation Smile.

Where can I find emotional support for myself if I have a cleft or my child if they have a cleft?

Right here at CleftProud! We want every single adult with a cleft, parent of a child with a cleft, and child with a cleft to feel supported and loved. We are here to help! You can connect with others just like you on our online community here or on our Facebook or Instagram! We want to help you become CleftProud!

I still have unanswered questions, where can I get them answered?

We would love to help! Please contact us here at support@CleftProud.com and we will do our best to answer any questions you may have!

Where can I find products for my child's recovery after surgery?

• https://www.enfamil.com/products/accessories

Can my child eat and drink before their first surgery?

Yes, babies usually learn to eat and drink eventually though it can take longer than a baby without a cleft. In addition, it is possible for babies to have a difficult time breathing and suckling at the same time.

What types of doctors should my child see related to their cleft?

At the very least, they should see a surgeon who specializes in cleft surgeries, a speech pathologist, and a dental professional. Additional doctors include an audiologist, an orthodontist, a geneticist, and a pediatrician.

What is the normal recovery time for surgeries?

It varies depending on the severity of the surgery but usually between a couple of days to weeks.

What treatment is available for adults with cleft?

Though a majority cleft teams focus on patients from birth to the age of 18, most teams will do their best to help adult patients in any way the can. Moreover, we recommend contacting the closest craniofacial team to you.