Portrait of a baby girl who has a cleft palate looking over the shoulder of her mother

No single gene causes cleft lip or palate, but a family history can play a role. (Getty Images)

During pregnancy, some parents learn their child will be born with a cleft lip or cleft palate. Other families find out at birth. Fortunately, cleft-repair surgery keeps improving. Eventually, tiny, faded scars between the mouth and nose may be the only visible signs. However, treatment – which encompasses far more than appearance – can take an entire childhood to complete.

[See: 10 Concerns Parents Have About Their Kids' Health.]

Cleft lip and cleft palate are congenital conditions. Cleft lip is a split or gap in the area between an infant's lip and nose, where the skin and muscle have not completely joined. Cleft palate is a gap in the roof of the mouth, either affecting the hard palate, soft palate or both. One or both sides of the developing face may be affected.

For many kids, cleft palate therapy is a process, not a simple surgical fix. According to patient information from Boston Children's Hospital, the surgical sequence may include one or a combination of the following:

  • Cleft lip repair is done before the child is 6 months old. Procedures to begin nasal correction or to close clefts in the gum may be included.
  • Cleft palate repair is usually performed between the ages of 9 and 11 months.
  • Children with persistent nasal speech after cleft palate repair may undergo an operation called a "pharyngeal flap" at 5 years or older.
  • When a child is 7 to 10, a bone graft to repair clefts involving the gum line may be needed.
  • At 12 to 14, kids may have revision surgery of the nasal tip.
  • Final corrective surgery of the outer nose and septum takes place at 15 to 20 years.

Surgery is only the beginning. At centers focusing on cleft and other craniofacial conditions, a child's team may include orthodontists and dentists; psychiatrists or psychologists; speech-language pathologists; ear, nose and throat specialists; nurses and feeding specialists; clinical geneticists; oral surgeons and plastic surgeons.

Orthodontic treatment with a facial appliance can help bring the gums and palate closer together. Later, as they grow, children may need braces, appliances, or in some cases, procedures to properly align their jaws.

Feeding poses a major challenge for kids with cleft palate. In some cases, breast-feeding may be possible with adaptations. In other cases, special bottles allow parents to bottle-feed. The transition to eating mushy or solid foods is also difficult for kids whose palates aren't fully repaired.

Middle-ear fluid and repeated ear infections, which are more common in children with cleft palates than in other kids, may contribute to temporary hearing loss. Early hearing evaluations are used to uncover problems and plan care, which may include ear tubes.

[See: How Hospitals Are Using Technology to Become More Patient-Centered.]

Clefting occurs in anywhere from 1 in 1,000 to 1 in 700 births, says Dr. John Meara, plastic surgeon in chief at Boston Children's Hospital and a professor at Harvard Medical School. Some differences exist between ethnic groups. Fewer people of African origin have clefts, he says, while Asian incidence is a little higher.

"Basically what I tell families when I see a patient with a cleft lip and a palate is: Nothing's missing," Meara says. "It's just that in utero, when we're all forming, there are segments of our head and face and brain that actually fuse together. Cleft lip is either when the lip doesn't fuse or cleft palate is when the palate doesn't fuse. From a surgical standpoint, our goal, obviously, is to finish that process."

There's no single gene that causes cleft lip or palate. However, family history can play a role. "If you have one child with a cleft, your chances of the next child having it are roughly 4 percent," Meara says. "If you have two kids in a row [with a cleft], then the chances for the next one go up to probably 14 or 15 percent."

Environmental factors, such as certain medications, tobacco or alcohol use during pregnancy, can increase the chance of a baby being born with a cleft condition.

Father and Son

About 45 years ago, Michael Greiner of Saratoga Springs, New York, was born with a bilateral cleft lip and palate. His son Matthew, now 4 1/2 years old, has the same condition, although his older sister does not.

Four decades later, diagnosis and treatments for cleft lip and palate have improved, making the experience much different for father and son, says Greiner, who is president of the Foundation for Faces of Children.

Although Matthew's condition is slightly more severe than his own, Greiner says, his appearance doesn't reflect that. "The procedures now are just so much better than when I went through it," he says. "He looks amazing."


Clockwise from top left: Matthew before surgery and following  gum, lip and palate procedures.

Clockwise from top left: Matthew before surgery and following gum, lip and palate procedures. (Courtesy of the Greiner family)


Greiner's facial differences were discovered at birth. His son was diagnosed through fetal ultrasound at 20 weeks into his wife Tara Greiner's pregnancy.

Treatment contrasted widely between generations. "They did my lip right away, and I had to stay in the hospital," Greiner says. After surgery, he could not see his mother or father right away: That was meant as a precaution to keep him from crying when they left and imperiling his healing.

Other things being equal, Matthew would have gone home with his parents right away. However, unrelated to his cleft condition, he was born prematurely. He had to spend time in the neonatal intensive care unit until he could be discharged.

Matthew had four surgeries on his lip and palate over the course of his first 14 months. "Each one built on the other one," Greiner says. "Each procedure brought the anatomy into closer symmetry." As a result, he says, his son's palate is "very symmetrical," unlike his own.

However, future procedures await Matthew. With teeth emerging from different parts of his palate, he will need orthodontics. A bone graft will be done to connect his gum line. In several years, he'll have an operation to move his jaw forward, and he may need rhinoplasty to correct his deviated septum, a common outcome for cleft lip and palate.


Matthew at 4 years old and ready for preschool.

Matthew at 4 years old and ready for preschool. (Courtesy of the Greiner family)


Matthew, who is starting to put words and sentences together, sometimes struggles to be understood, his father says. He receives speech therapy four times a week. In the fall, he will start junior kindergarten.

Overall, Matthew is a healthy boy who will overcome early functional issues, Greiner says: "The reality is, having cleft is a journey."

As kids with cleft palate enter their adolescent growth years, the upper jaw tends not to develop as quickly. "You have braces, a severe underbite and you've got a scar on your lip," Greiner says. "So it creates for some awkward teenage years – more awkward than what you already have as a teenager."

If you see a child with an open lip or other facial difference, Greiner says, most parents are happy to talk about it. "Just ask a reasonable, caring question," he advises. As for parents of these children, he adds, "the most important thing is treating kids as normally as possible and loving the heck out of them."

Delicate Surgery

If your child is diagnosed with cleft lip, cleft palate or other craniofacial condition, you should consider a specialized center, Meara emphasizes – even if you must travel. With such delicate surgery and the many related services kids will need, he says, experience can make a significant difference in facial appearance, functional abilities and lifelong speech.

Meara compares decision-making for cleft-palate treatment to what parents of children with congenital heart conditions must take into account. "It's been proven in cardiac surgery that centers that deal with [cases] more frequently have better outcomes," he says. Other complex conditions, like cleft palate, call for similar expertise, he emphasizes. His own center sees about 150 new cleft patients a year.

[See: 9 Extra Safety Assignments for Hospital Patients.]

The outlook is positive for otherwise healthy children with cleft lip and palate. "They should be expected to have great lives, go to school, get married and have children," Meara says. "This is something that is very treatable."

Cleft-palate treatment is far more accessible to U.S. families than in some developing nations. Because of barriers to care, some children with facial deformities may not undergo surgery until they're much older, if at all. Following a 2015 declaration from the World Health Organization, an international effort has begun to scale up surgical services, including cleft surgery, in all low- and middle-income countries to address this health inequity.


The Honor Roll of Best Children's Hospitals 2017-18

A Photo Tour of the 2017-18 Best Children's Hospitals

Doctor letting girl use stethoscope

(Getty Images)

Which hospitals are best for the sickest kids? The 2017-18 U.S. News Best Children’s Hospitals rankings identify 82 hospitals with demonstrated expertise in one or more of 10 pediatric specialties. Ten hospitals earned a place on the Best Children's Hospitals Honor Roll.

Click through the slides to view the Honor Roll hospitals.

10. Children's National Medical Center

10. Children's National Medical Center

Children's National Medical Center

(Courtesy of Children's National Medical Center)

Location: Washington, D.C.

2016-17 Honor Roll rank: None

Number of 2017-18 Honor Roll specialties: 10

Highest-ranking specialties: Neonatology (#1), Cancer (#7), Neurology & Neurosurgery (#9), Orthopedics (#9). 

See all of this hospital's rankings

9. Children's Hospital of Pittsburgh of UPMC

9. Children's Hospital of Pittsburgh of UPMC

Children's Hospital of Pittsburgh of UPMC

(Courtesy of Children's Hospital of Pittsburgh of UPMC)

Location: Pittsburgh

2016-17 Honor Roll rank: 7 (tie)

Number of 2017-18 Honor Roll specialties: 10

Highest-ranking specialties: Diabetes & Endocrinology (#3), Gastroenterology & GI Surgery (#5), Pulmonology (#5).

See all of this hospital's rankings.

7. (tie) Nationwide Children's Hospital

7. (tie) Nationwide Children's Hospital

(Courtesy of Nationwide Children's Hospital)

Location: Columbus, Ohio

2016-17 Honor Roll rank: 10

Number of 2017-18 Honor Roll specialties: 10

Highest-ranking specialties: Neurology & Neurosurgery (#6), Pulmonology (#6), Orthopedics (#8). 

See all of this hospital's rankings

7. (tie) Ann and Robert H. Lurie Children's Hospital of Chicago

7. (tie) Ann and Robert H. Lurie Children's Hospital of Chicago

Ann and Robert H. Lurie Children's Hospital of Chicago

(Courtesy of Ann and Robert H. Lurie Children's Hospital of Chicago)

Location: Chicago

2016-17 Honor Roll rank: 6

Number of 2017-18 Honor Roll specialties: 10

Highest-ranking specialties: Cardiology & Heart Surgery (#3), Urology (#4), Gastroenterology & GI Surgery (#7).

See all of this hospital's rankings.

6. Children's Hospital Los Angeles

6. Children's Hospital Los Angeles

Children's Hospital Los Angeles

(Courtesy of Children's Hospital Los Angeles)

Location: Los Angeles

2016-17 Honor Roll rank: 7 (tie)

Number of 2017-18 Honor Roll specialties: 10

Highest-ranking specialties: Diabetes & Endocrinology (#5), Orthopedics (#6), Neonatology (#6).

See all of this hospital's rankings.

5. Johns Hopkins Children's Center

5. Johns Hopkins Children's Center

Johns Hopkins Children's Center

(Courtesy of Johns Hopkins Children's Center)

Location: Baltimore

2016-17 Honor Roll rank: None

Number of 2017-18 Honor Roll specialties: 10

Highest-ranking specialties: Neonatology (#4), Neurology & Neurosurgery (#5), Cancer (#6). 

See all of this hospital's rankings.

4. Texas Children's Hospital

4. Texas Children's Hospital

Texas Children's Hospital, Houston

(Courtesy of Texas Children's Hospital)

Location: Houston

2016-17 Honor Roll rank: 4

Number of 2017-18 Honor Roll specialties: 10

Highest-ranking specialties: Cardiology & Heart Surgery (#1), Pulmonology (#2), Cancer (#4), Nephrology (#4), Gastroenterology & GI Surgery (#4).

See all of this hospital's rankings.

3. Cincinnati Children's Hospital Medical Center

3. Cincinnati Children's Hospital Medical Center

Cincinnati Children's Hospital Medical Center

(Courtesy of Cincinnati Children's Hospital)

Location: Cincinnati

2016-17 Honor Roll rank: 3

Number of 2017-18 Honor Roll specialties: 10

Highest-ranking specialties: Gastroenterology & GI Surgery (#3), Nephrology (#3), Neurology & Neurosurgery (#3), Urology (#3), Pulmonology (#4). 

See all of this hospital's rankings.

2. Children's Hospital of Philadelphia

2. Children's Hospital of Philadelphia

Children's Hospital of Philadelphia

(Courtesy of Children's Hospital of Philadelphia)

Location: Philadelphia

2016-17 Honor Roll rank: 2

Number of 2017-18 Honor Roll specialties: 10

Highest-ranking specialties: Diabetes & Endocrinology (#1), Pulmonology (#1), Gastroenterology & GI Surgery (#2), Neonatology (#2), Nephrology (#2), Neurology & Neurosurgery (#2), Orthopedics (#2), Urology (#2). 

See all of this hospital's rankings.

1. Boston Children's Hospital

1. Boston Children's Hospital

Boston Children's Hospital

(Courtesy of Boston Children's Hospital)

Location: Boston

2016-17 Honor Roll rank: 1

Number of 2017-18 Honor Roll specialties: 10

Highest-ranking specialties: Gastroenterology & GI Surgery (#1), Nephrology (#1), Neurology & Neurosurgery (#1), Orthopedics (#1), Urology (#1), Cancer (#2), Cardiology & Heart Surgery (#2), Diabetes & Endocrinology (#2), Neonatology (#2).

See all of this hospital's rankings.

Read More

Tags: health, patients, patient advice, children's health, surgery, parenting, speech problems


Lisa Esposito is a Patient Advice reporter at U.S. News. She covers health conditions, drawing on experience as an RN in oncology and other areas and as a research coordinator at the National Institutes of Health. Esposito previously reported on health care with Gannett, and she received her journalism master's degree at Georgetown University. You can follow her on Twitter, connect with her on LinkedIn or email her at lesposito@usnews.com.

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