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.
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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.
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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.”
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, 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.
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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.
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When Your Child Has a Cleft Lip and Palate originally appeared on usnews.com
