Orofacial clefts, which include cleft lip and cleft palate, are among the most common facial abnormalities that a child can be born with, but finding out that your baby has one can be hard.
What’s more, the news comes with big questions about what kind of treatment will be needed and how her health might be affected both in the short- and long-term. These answers can help.
What is cleft lip and palate?
Cleft lip and cleft palate occur when a baby’s lip or the roof of her mouth don’t fuse together as they should during the early weeks of pregnancy. The result is an opening or split in the lip (cleft lip) or an opening in the roof of the mouth (cleft palate). Children can be born with either cleft lip or palate, or both. There can be one or more splits, and they can be slight or severe.
Orofacial clefts are one of the most common facial abnormalities in the United States. Roughly 1 in 1,600 babies is born with both cleft lip and cleft palate, according to the Centers for Disease Control and Prevention (CDC); about 1 in 2,800 babies is born with a cleft lip without a cleft palate; and 1 in 1,700 babies is born with cleft palate alone.
Cleft lips and/or palates can make it harder for a child to eat efficiently or speak clearly. They’re also tied to teeth and hearing problems and can increase the risk for frequent ear infections.
Types of orofacial clefts
Babies can be born with cleft lips or cleft palates. It’s also possible for a baby to be born with both.
- Cleft lips are openings in the upper lips that occur when a baby’s lip tissue doesn’t completely join together. They can be small, but can also extend up to the bottom of a child’s nose. Cleft lips can form on one or both sides of a child’s lip, and in rare cases, clefts can occur in the middle of the lip.
- Cleft palates are openings in the roof of the mouth, or palate. Some babies have a partial palate opening, while others’ palates are open in the front and back parts. Small splits in the back of the palate might not be noticed immediately at birth, especially if the split is covered by the mouth’s lining. These are called submucous cleft palates.
What causes cleft lip and cleft palate in children?
Orofacial clefts form when the tissue on the sides of a baby’s lips or palate don’t join together properly in the womb — something that typically happens between 6 and 9 weeks of pregnancy.
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Experts don’t fully understand what causes cleft lip and/or palate, but suspect that it’s likely due to a combination of genetic and environmental factors. According to the CDC, some research suggests that smoking during pregnancy can increase a baby’s chances for having an orofacial cleft.
Having diabetes before becoming pregnant or using certain medications during pregnancy (like topiramate or valproic acid for epilepsy, particularly during the first trimester) have also been shown to raise the risk.
Symptoms of cleft lip and cleft palate
Orofacial clefts, especially lip clefts, can often be detected through a routine ultrasound as early as 13 weeks. If a cleft isn’t seen before a baby is born, it’s usually apparent at birth. Depending on the size and location of the cleft, you may see:
- Cleft lip: A split in the lip that looks like a small notch or extends up towards the bottom of the nose.
- Cleft palate: A split in the roof of the mouth, with the face itself looking unaffected.
- Cleft lip and palate: A split in the lip that extends into the roof of the mouth.
Babies with cleft lips and/or palates can have other symptoms as well, including:
- Trouble with feeding or swallowing
- Liquids or foods coming out of the nose
- Chronic ear infections
- A nasal-sounding voice
Sometimes cleft palates towards the back of the mouth may be harder to spot at birth, especially if the split is covered by the mouth’s lining. Called submucous cleft palates, these clefts don’t typically affect a baby’s appearance. But they can still cause feeding and ear problems and cause a child’s voice to sound nasal.
Latest treatments for cleft lip and cleft palate
Cleft lips and palates can be successfully treated with surgery. Surgery to repair cleft lips is typically recommended within the first few months of baby’s life and before 12 months, while surgery to repair cleft palates is typically recommended within the first 18 months. Sometimes follow-up surgeries are needed as a child grows. In some cases, kids with chronic ear infections may need to have ear tube surgery.
While contemplating surgery can be very scary, you’ll have a team of specialists to help you and your baby through the procedures. This team usually includes your baby’s pediatrician, a plastic surgeon, a pediatric dentist and orthodontist, an ear, nose and throat specialist (ENT), a speech therapist, an audiologist (hearing specialist) and a genetic counselor.
While you wait for surgery, you may need help ensuring your baby can feed properly. Most babies with orofacial clefts have weak sucks that can make both breast- and bottle-feeding difficult. Using a special bottle nipple can help your baby drink formula or pumped breast milk. If you choose to try to continue breastfeeding, work with an experienced certified lactation consultant.
As your sweetie gets older, she’ll continue to be monitored by her care team for any complications caused by her cleft. Kids with speech challenges may need speech therapy, for instance, while others might benefit from orthodontic adjustments like braces.
Even though they’re fixable, orofacial clefts can be challenging to deal with. But with early attention and a solid care team, your baby’s lip or palate can be repaired.
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