What is a cleft lip?

The word cleft means split or separation. Your child’s upper lip is split because it didn’t form correctly as they developed in the womb. A cleft lip can lead to some challenges, but these challenges can be managed. Once treated, a cleft lip rarely causes long-term problems.

When part of the lip does not come together, it’s called a partial cleft lip.

When the lip does not come together and the separation goes up into the nose, it’s called a complete cleft lip.

What causes a cleft lip?

Most of the time the cause of a cleft lip is not known. One thing that may increase the risk is having a family history of cleft lip. Other things that can increase the risk are smoking or drinking alcohol during pregnancy, taking certain medicines, or not taking enough folate. Always tell your doctor what medicines you are taking.

How is a cleft lip treated?

A cleft lip is repaired with surgery. This surgery is done in the first few months of life and recommended within the first 12 months of life. Depending on how severe the cleft is, your child may need more than one surgery. Your child’s doctor will discuss the surgery plan with you. In the meantime, you will be shown how to care for your new baby.

Who will help me care for my baby?

Always remember that you are not alone. A team of specialists will help you care for your child. This team will include some or all of these key members:

• Plastic or reconstructive surgeon. This doctor repairs areas of the body so they appear and function more normally. This doctor may do the surgery to repair the cleft lip.

• Otolaryngologist. This doctor specializes in the health of the ear, nose, and throat. This doctor is also called an ENT doctor. In some cases, an ENT doctor may do the surgery to repair the cleft lip.

• Genetic specialist. This specialist helps find out whether the cleft lip has been passed down through the family (genetic condition). This helps you know whether children you have in the future are more likely to have a cleft lip, cleft palate, or both. They can also diagnose any genetic syndromes or conditions related to cleft lip.

• Speech pathologist, occupational therapist, or both. These are health care providers who help identify and treat speech and language problems. They may discuss feeding issues with you. These may occur along with cleft lip.

• Psychologist or social worker. This specialist helps your child and family cope with emotional, social, and financial issues that may arise because of cleft lip.

• Primary health care provider. This provider focuses on the general health needs of patients.

• Nurses. These health care providers care for your child in the hospital before, during, and after surgery. Nurses also help with any feeding issues.

• Pediatric dentist. This is a specialist who addresses oral health needs of children.

• Lactation specialist. If you are planning on breastfeeding and your child has difficulty due to the cleft lip, this specialist can help your child successfully breastfeed.

Caring for a child with a cleft lip

A child born with a cleft lip has the same needs as other newborns. But meeting these needs can be challenging at times. As parents of a child with a cleft lip, have patience as you find the best way to care for your baby. Some common challenges of caring for a baby with a cleft lip include:

• Feeding. Depending on how severe the cleft lip is, your child may have trouble feeding. Special nipples and bottles can help make feeding easier. Your nurse, occupational therapist, or lactation specialist will help you figure out what works best for your baby. They may also help with feeding issues. You won’t be sent home from the hospital until your baby is feeding correctly and is gaining weight.

• Speech. A speech pathologist may work with your child in the future. The speech pathologist will help your child develop correct language and speech skills if needed.

• Appearance. Talk with siblings, other family members, and friends about your baby’s cleft lip before you introduce the baby. This helps create sensitivity about your baby’s condition.

Coping

You may wonder how you’ll be able to care for your new baby. This is normal. Remember that your child’s cleft lip can be repaired. And most important, remember that your child needs to be loved, touched, and comforted. Support groups are available so you can talk with other parents of children with cleft lips.

To learn more

If you have questions, talk to your child’s care team. Also, look in your local library or bookstore for books about cleft-affected children. These online resources can also be helpful:

• American Cleft Palate-Craniofacial Association at www.acpa-cpf.org

• American Society of Plastic Surgeons at www.plasticsurgery.org/Reconstructive-Procedures/Cleft-Lip-and-Palate.html

Financial concerns

In the U.S., cleft lip repair is usually covered by private insurance or as part of a state or federal program, such as Medicaid. Other programs can also help pay for surgery and related expenses. Talk with your doctor, a member of your care team, or a social worker about any financial concerns you have about the care of your child.