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Cleft lip and palate, explained simply

What it is, why it happens, what it changes for the child and how it is treated, from birth to the end of growth. Content written from the study carried out at Kibuye Hope Hospital and the references it cites.

Nurse watching over a newborn in a maternity ward
01

What is a cleft?

The face forms between the 4th and 12th week of pregnancy, as several “buds” of tissue meet and fuse together. When one of them does not fuse completely, an opening remains: that is the cleft. It is present from birth and is neither contagious nor caused by anything the mother did or thought during pregnancy.

Cleft lip

An opening in the upper lip, on one side (unilateral) or both (bilateral). It can extend up to the nostril and into the gum.

Cleft palate

An opening in the palate, the partition that separates the mouth from the nose. It can involve the soft palate (the soft part at the back) and the hard palate. It interferes with feeding and speech.

Cleft lip and palate

Both at once: the most complete form. It is the most frequent in the Kibuye series (46.7% of the operations studied).

Unilateral forms are more common than bilateral ones, and the left side is affected in nearly 70% of cases. Clefts of the lip affect boys more often; isolated clefts of the palate affect girls more often.

02

How many children are affected?

1 in 700to 1 in 1,000 births worldwide, with wide variations between regions and ancestries.
4 millionpeople were living with a cleft in 2021; more than 80% of them in low- and middle-income countries.
29%of African children are underweight at the time of their first surgery (Smile Train global database).

Among populations of African ancestry, the reported frequency is close to 1 birth in 2,500, a figure that is probably underestimated for lack of registries. In Burundi, no disaggregated national data existed before the Kibuye study: the country appeared only in a regional series covering fourteen East African countries.

03

Why does it happen?

The cause is multifactorial: several factors combine, and in most cases none can be singled out. Known factors include folic acid deficiency during pregnancy, tobacco, alcohol, certain pesticides, and maternal diabetes and obesity. About 70% of clefts occur on their own, without any other malformation; several genes involved in the development of the face play a part.

04

What the cleft changes for the child

Without repair, a cleft has consequences that go well beyond appearance. They explain why care begins at birth and continues until the end of growth.

Feeding and growthBecause the mouth and nose are not sealed off from each other, the baby cannot create the suction needed to feed: milk comes back through the nose, feeds take longer, the baby tires and gains weight poorly.
HearingIn cleft palate, the muscle that opens the Eustachian tube works poorly: otitis media with effusion (glue ear) is almost constant and can lead to hearing loss.
SpeechAs long as the palate is not closed, air and sounds escape through the nose (nasal-sounding voice). Palate repair, followed by speech therapy, determines how speech develops.
Teeth and jawsMissing or extra teeth, misaligned teeth, sometimes an upper jaw that is too small: dental and orthodontic follow-up is needed as the child grows.
Social lifeStigma, isolation and sometimes dropping out of school are realities that early repair makes it possible to avoid.
InfectionsRegurgitation and repeated respiratory infections worsen the nutritional deficit of an infant who has not been operated on.
05

Treatment, step by step

Care is multidisciplinary: surgeon, pediatrician, nutritionist, speech therapist, ENT specialist, orthodontist and, if needed, psychologist. In the Espoir Sourire network, the same pathway applies in every partner hospital.

  1. D0

    From birth: feed and weigh

    Special bottles, upright position, frequent pauses; a palatal plate if needed. The goal is a baby who gains weight steadily. The weight, length and age on the day are used to calculate the weight-for-height z-score, which decides whether the child is fit for the operating room.

  2. 3 M

    Around 3 months: lip repair (cheiloplasty)

    Classic benchmarks of the “rule of 10s”: at least ten weeks old, about 4.5 kg, hemoglobin above 10 g/dl. At Kibuye, the Fisher technique is the most widely used; bilateral forms follow Mulliken's principles. Reference window: 3 to 6 months.

  3. 9 M

    Between 9 and 18 months: palate repair (palatoplasty)

    It separates the mouth from the nasal cavity and determines speech. Most often a two-flap technique, or a Furlow palatoplasty and intravelar veloplasty depending on the anatomy. A large trial (TOPS) shows less nasal air escape in the voice after palate repair at 6 months than at 12 months.

  4. 1-3 M

    After each operation: check-up at 1 month and 3 months

    Short hospital stay (median 2 days at Kibuye), stitches removed at around 5 to 7 days, then a consultation and a telephone call to the family. A complication spotted early is a complication that gets treated.

  5. 2-6 Y

    Early childhood: speech and hearing

    Speech therapy after the palate is closed, ENT monitoring (ear infections, hearing), dental check-up. A reinforcing veloplasty may be offered if the voice remains nasal-sounding despite therapy.

  6. >6 Y

    Until the end of growth: orthodontics and touch-ups

    Teeth alignment, bone grafting of the gum if necessary, correction of the nose or lip at the adolescent's request. Revision procedures are provided with no age or weight condition.

06

What can happen after the operation

Like any surgery, cleft repair can have complications. The most frequent are the scar opening up (wound dehiscence) and fistula, a small residual hole between the mouth and the nose after palate repair. Next come infection, bleeding and, more rarely, breathing difficulty. An asymmetry of the lip or a thick scar (keloid) are more a matter of the cosmetic result and are corrected later.

8.6%fistulas after palate repair in a worldwide review of 9,294 patients; 25 to 35% in several African series.
5 / 300fistulas in the 300 operations studied at Kibuye: a low rate compared with the literature.
×2.65the risk of complication in bilateral clefts, the only independent factor found; hence stronger surgical mentoring for these forms.

The Kibuye study also showed that the nutritional status accepted for surgery, judged on weight-for-height, did not increase the risk of complication. What changes the figures most is follow-up: among families reached by telephone, two to three times more complications are spotted, and they are treated.

07

In Burundi

55.9%of children aged 6 to 59 months are stunted (chronic malnutrition), compared with 6% wasting (acute malnutrition).
1 / 100,000specialist doctor per hundred thousand inhabitants: training national teams is decisive.
638cleft operations at Kibuye Hope Hospital between April 2017 and June 2026, for children who came from almost every province.

A very large number of Burundian children are short and light for their age while remaining well proportioned. Judging fitness for surgery on weight-for-age therefore kept children away from the operating room who could have been operated on without any additional risk. Since April 2023, weight-for-height is what decides, and the median age at first operation has dropped from 9 to 6 months.

08

Questions from families

Is it my fault?

No. The cleft forms very early in pregnancy, often before the mother even knows she is pregnant, and results from several combined factors. No thought, no look, no word causes a cleft.

Will my child be able to eat, speak and go to school normally?

Yes, in the vast majority of cases, provided that the lip and then the palate are repaired at the recommended ages and that follow-up (feeding, hearing, speech therapy) is maintained. That is the whole purpose of the pathway offered by the network.

At what age should the operation take place?

The lip at around 3 months (between 3 and 6 months), the palate between 9 and 18 months. The earlier the child is seen, the easier it is to keep to these timelines: at Kibuye, surgical delay has been halved since 2023.

My baby is small: can he or she still be operated on?

Being small for one's age is not an obstacle if the child is well proportioned, that is, if their weight matches their height. Weight-for-height is what is assessed. If the child is genuinely thin, 4 to 6 weeks of nutritional preparation most often makes them eligible.

How long is the hospital stay?

Usually 2 to 3 days: admission the day before, weighing and tests, operation the next day, discharge once feeding has resumed. A check-up is scheduled at 1 month and then at 3 months.

What if a fistula or an opening of the scar appears?

Come back for a consultation without delay: these complications can be repaired, most often with a small local procedure. Also mention them during the telephone follow-up call.

What should I do if the baby is not gaining weight?

Visit the nearest partner center: special bottles, positioning advice and, if needed, enriched feeding make it possible in most cases to get growth back on track within a few weeks.

Sources: IRAKOZE B. Comparison of the rate of postoperative complications in children with cleft lip and/or palate operated on according to two anthropometric eligibility criteria, doctoral thesis in medicine, Hope Africa University, 2026 (chapters 1 and 3, references cited: Salari 2022, Ma 2025, Delage 2022, AGVSAN 2023, IPC 2024, WHO Burundi 2024, Smile Train 2025, Hardwicke 2014, TOPS 2023).