About UsCraniofacial anomalies – Cleft and/or cleft palate
A cleft lip occurs when the lip did not quite close during the development before birth and needs to be surgically closed.
The roof of the mouth is also called the palate. A cleft palate is when there is an opening or cleft in the roof of the mouth due to the palate not closing during development before birth.
About 3% of all babies have some kind of birth defect. One of the most common birth defects is a cleft lip and/or palate.
The roof of the mouth is also called the palate. A cleft palate is when there is an opening or cleft in the roof of the mouth due to the palate not closing during development before birth.
About 3% of all babies have some kind of birth defect. One of the most common birth defects is a cleft lip and/or palate.
Will my baby have other problems?
A baby with a cleft palate will probably need a special feeding bottle until the cleft is repaired. This is because the cleft prevents the baby from having a strong suction on the bottle or breast. Babies with a cleft lip do not usually need special bottles. Your child may also have more ear infections than other children. In most cases the cleft is “isolated.” This means that your child is at no greater risk than any other child for having learning problems or other birth defects.
How will I know if my child's cleft is an isolated problem?
Most of the time (95% of babies with cleft lip with or without cleft palate and 85% for babies with cleft palate alone) a cleft is isolated. Sometimes a cleft can occur as part of a syndrome (5% of babies with cleft lip with or with out cleft palate and 15% of the time for babies with cleft palate alone). In some cases, other medical problems may be detected on an ultrasound before birth. In other children, additional medical problems may be detected after birth. You may be offered an appointment with a geneticist either privately or as part of a craniofacial panel. A clinical geneticist is a doctor who will examine your child to see if he/she has any features which may indicate there is an increased risk of other problems. More than 300 syndromes can have a cleft lip and or palate as one of the features. Some of the conditions which may involve a cleft are:
What causes the cleft?
Most of the time the cause of an isolated cleft lip and/or palate is not known. It is known that the risk of having a cleft is increased in babies of mothers who take certain seizure medications, are diabetic or who drink an excess of alcohol. Otherwise, it is probably caused by a combination of genes passed down from the mother and the father. There may also be some non-genetic factors that are not yet known.
How does a cleft occur?
Early in our development we all have clefts. Our faces are spread out, but as we develop the face comes together and finally seals itself. The lips form between 4 and 6 weeks of pregnancy and the palate forms between 6 and 12 weeks of pregnancy. In babies born with a cleft the sealing did not quite finish.
When will my child's cleft be repaired and what other surgeries can we anticipate?
Each child is different, so the exact timing of the repair will be decided between you and your doctor. As a rough guideline, a cleft lip is repaired around 10-14 weeks of age and a cleft palate is repaired at 10-14 months of age.
In 80-90% of children who have a cleft lip repair only one surgery is needed, in the other 10-20% a revision surgery is later suggested for the lip. Following the first palate surgery the palate sometimes heals with a fistula (opening). This occurs in 5-10% of the children and a second surgery will be offered to close the fistula. Between the ages of 4 and 6 years, around 25% of children who had a cleft palate repair will have speech problems that another surgery could improve. In the majority of children born with both a cleft lip and a cleft palate a surgery called an alveolar bone graft will be recommended between the ages of 8 and 11 years-old. The alveolar bone is the hard surface just behind the teeth. In a person with cleft lip and palate this bone is often affected by the cleft. An alveolar bone graft removes some bone (usually from the hip) and transfers it to the alveolus, or gum. This graft helps keep the teeth in their correct position.
Surgery has greatly improved over the years, and while there is always a scar when you have surgery, that scar may not be very big. Your surgeon can show you before and after surgery pictures of other children.
The sense of feeling in the lip and palate is not usually reduced by the surgeries.
In 80-90% of children who have a cleft lip repair only one surgery is needed, in the other 10-20% a revision surgery is later suggested for the lip. Following the first palate surgery the palate sometimes heals with a fistula (opening). This occurs in 5-10% of the children and a second surgery will be offered to close the fistula. Between the ages of 4 and 6 years, around 25% of children who had a cleft palate repair will have speech problems that another surgery could improve. In the majority of children born with both a cleft lip and a cleft palate a surgery called an alveolar bone graft will be recommended between the ages of 8 and 11 years-old. The alveolar bone is the hard surface just behind the teeth. In a person with cleft lip and palate this bone is often affected by the cleft. An alveolar bone graft removes some bone (usually from the hip) and transfers it to the alveolus, or gum. This graft helps keep the teeth in their correct position.
Surgery has greatly improved over the years, and while there is always a scar when you have surgery, that scar may not be very big. Your surgeon can show you before and after surgery pictures of other children.
The sense of feeling in the lip and palate is not usually reduced by the surgeries.
If I had another child, could it have a cleft?
If you have a child with an isolated cleft, then the chance of you having another child with the same condition depends upon how many people in your family also have a cleft. The greater the number, the greater the risk.
The information for this table was adapted from Clinical Genetics Handbook 2nd edition Blackwell Scientific publications. Other sources of information may give slightly different numbers. The figures given depend upon which study was used for the data. The more people in a family that have a cleft the greater the chance another child will have a cleft. There are some families where the chance of having a child with a cleft is as high as 50%. In these families there is a single gene that causes the cleft and it is passed down from parent to child in an autosomal dominant manner. Whichever study is used, if a child has an isolated cleft, it is far more likely that another child in the family will not have a cleft.
The chance of having a child with a cleft versus a child with no cleft
The information for this table was adapted from Clinical Genetics Handbook 2nd edition Blackwell Scientific publications. Other sources of information may give slightly different numbers. The figures given depend upon which study was used for the data. The more people in a family that have a cleft the greater the chance another child will have a cleft. There are some families where the chance of having a child with a cleft is as high as 50%. In these families there is a single gene that causes the cleft and it is passed down from parent to child in an autosomal dominant manner. Whichever study is used, if a child has an isolated cleft, it is far more likely that another child in the family will not have a cleft.
The chance of having a child with a cleft versus a child with no cleft
|
Affected Family Members
|
Cleft Lip with or without
Cleft Palate |
Cleft Palate
|
||
|
Percentage with Cleft
|
Percentage with No Cleft
|
Percentage with Cleft
|
Percentage with No Cleft
|
|
| None |
0.1
|
99.9
|
0.04
|
99.96
|
| One Sibling |
3-7
|
93-97
|
2-5
|
95-98
|
| One Parent |
2-4
|
96-98
|
3-7
|
93-97
|
| One Parent and a Sibling |
11-14
|
86-89
|
15-20
|
80-85
|
| Two Siblings |
8-14
|
86-92
|
10-13
|
87-90
|
Is there anything I can do to prevent a cleft?
Some studies suggest taking folic acid when pregnant may reduce the chances of having a cleft. Folic acid is found in most multivitamins. It is known that folic acid does reduce the risk of another unrelated birth defect called spina bifida. This is an opening in the spine.
Support groups
References
Fraser F.C.: Research revisited. Cleft Palate Journal, July 1989; 25(3) 225-257.
Gorlin R.J., Cohen M.M., Hennekam R.C.: Syndromes of the Head and Neck. Oxford University Press, 1990.
Jones K.L., Smith’s Recognizable Patterns of Human Malformation. 5th Edition. W.B. Soliders Company A Division of Harcourt Brace and Company, 1997.
Online Mendelian Inheritance in Man, OMIM (TM). Johns Hopkins University,
Baltimore, MD. MIM Number: 119540: 2001: World Wide Web URL:
http://www.ncbi.nlm.nih.gov/omim/
Gorlin R.J., Cohen M.M., Hennekam R.C.: Syndromes of the Head and Neck. Oxford University Press, 1990.
Jones K.L., Smith’s Recognizable Patterns of Human Malformation. 5th Edition. W.B. Soliders Company A Division of Harcourt Brace and Company, 1997.
Online Mendelian Inheritance in Man, OMIM (TM). Johns Hopkins University,
Baltimore, MD. MIM Number: 119540: 2001: World Wide Web URL:
http://www.ncbi.nlm.nih.gov/omim/
Additional resources
Craniofacial Anomalies Guide
