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Incidence of Clefts.

Clefts affect approximately 1 in every 700 babies in Ireland.

There has been no national register of infants born with a cleft lip and/or palate
in Ireland. The compilation of such a register for the purposes of clinical audit
and strategic planning was only made possible in 2000 with the appointment of a
Cleft Co-ordinator in the Eastern Regional Health Authority area.

Consequent on the lack of record-keeping, any figure given of the number of babies
born with a cleft lip and/or palate in Ireland can only be an approximation. The
figure of approximately 75 children quoted in the report of a review into the
development of oral and maxillofacial surgery services in the Eastern Health Board
region, dated February 1999, is probably based on the often given estimation of 1
in 700. Based on the provisional number of live births in 1998 of 53,551, this
figure calculates correctly.

However, as can be seen from the varied research reports into the incidence of
cleft throughout the world, and reported here, there would seem to be quite a
variance in reported figures. Ratios have gone as high as 1 in 481, and as low as
1 in 1000. Most reported studies we have examined indicate a figure of around 1 in
700 or higher. The figures from Denmark, where records have been kept since 1937,
consistently show a higher ratio. The average for the years 1976 to 1981 was 1 in
529, with a high of 1 in 481 in 1981. Analysis of the various research reports
would seem to suggest that 1 in 700 may be a conservative figure. Many figures,
one exception being Denmark, are based on voluntary disclosure and not accurate
record-keeping. Based on the Danish figure of 1 in 529, this would give an Irish
total of 101 such births in 1998.

A fair conclusion would be that the figure of 75 per annum may be conservative,
and it could theoretically be as much as 30% higher, particularly allowing for
year to year variation.

American figures indicate that the incidence of cleft lip and/or palate varies
between different races; among Asians it is 1.7 per 1000 births, while among
African-Americans it is approximately 1 per 2500 births. The risk of isolated
cleft palate seems to be the same across all racial groups.

The incidence of cleft palate occuring alone is about 1 in 2000 births. More than
70% of babies with cleft lip also have cleft palate.

Combined cleft lip and palate represents approximately 50% of incidents, cleft
palate alone circa 30%, and cleft lip alone circa 20%. These ratios are at slight
variance with figures reported from Denmark and the UK and referred to below.
Other reports have also given slightly variant figures.

According to Doctor John Mulliken, Director of the Craniofacial Centre, Children�s
Hospital, Boston, Massachusetts, less than 10% of cleft lips are bilateral.

Where a child is born with a cleft, there is a 5% chance of the next born also
having a cleft - That is a 1 in 20 chance. If a second child is born with a cleft,
the likelihood increases further for any subsequent child.

The chances of a parent who was born with a cleft having a cleft baby is
approximately seven in one hundred.

Cleft lip and palate are what are known as congenital or birth defects, and are
the fourth most common birth defect, being the most common of the head and neck
region.

Clefts of the lip and combined lip and palate are twice as common in males.
Isolated cleft palates are twice as common in females. This may be explained by
the fact that the secondary palate closes one week later in females.

According to the UK Craniofacial Anomalies Register, patients with cleft lip only,
account for 22% of total cases, with cleft lip and palate accounting for 34%, and
cleft palate only 44%. The sex distribution is reported as 59% male and 40%
female, with 1% unknown.

Statistics from Denmark, where there is a compulsory reporting code, indicate that
the reported incidence of cleft lip and/or palate is higher than the widely
accepted figure of 1 in 700. Danish figures indicated a rise from 1 in 667 to 1 in
529 between 1942 and 1981. It is thought that the Danish figure may be due to
better reporting, decreased neonatal mortality, increased levels of environmental
teratogens, and increased frequency of marriage and childbirth in cleft patients
because of better care. The sex distribution among Danish cases according to the
Jensen report was 61% male and 39% female. Cleft lip accounted for 34% of cases,
cleft lip and palate 39%, and cleft palate 27%. The ratios of cleft lip, cleft lip
and palate, and cleft palate among the sexes mirrors the ratios reported above.

According to statistical data from Brian Sommerlad, Consultant Plastic Surgeon,
North East Thames Cleft Service, unilateral cleft lip and palate accounted for
24.1% of clefts among 522 patients, excluding submucous cleft palate, bilateral
cleft lip and palate 9.4%, isolated cleft palate 41%, and cleft lip 25.5%. These
figures further highlight the discrepencies in the reported statistical data from
different sources.

During the period 1975 to 1992, 616 children, amde up of 367 boys and 249 girls,
with cleft lip and palate were born in greater Stockholm, Sweden, population 1.3
million. The number varied from 20 in 1977 to 51 in 1992. Related to the number of
live births, this gave a range of 1.2 per 1000, that is 1 per 833, to 2 per 1000,
or 1 per 500, live births and a mean incidence of 1.7 per 1000, or 1 per 588, live
births.

Of the total 616 infants, 163, or 26%, had cleft lip, 239 cases, or 39%, had
isolated cleft palate, and 214 cases, or 35%, had both cleft lip and palate. Of
these 214 infants with complete clefts, 143 were unilateral and 71 were bilateral
cleft lip and palate.

This information is available from www.cleft.ie