The Swiss Cleft Registry was established in 2011 to investigate this condition, with the support and participation of all Swiss centers involved in the care of these patients.
Our goal is to enhance the care for children affected by these conditions in Switzerland by improving epidemiological knowledge.
What does this registry contribute to?
Obtaining precise national data
On types of clefts, with precise diagnosis, prevalence and possibly identify risk factors
Formulating research hypothesis
To improve patient care and have data to answer public health questions
Providing better information
To parents and to patients who want to be parents
Cleft lip and palate explained
Cleft lip
A cleft lip is a failure of fusion of the upper lip.
It can be incomplete or complete (opening the nostril into the mouth) and on one or both sides. The shape of the nose is also changed by the cleft.
Cleft palate
A cleft palate is a separation in the palate which can be:
a separation of the muscles with a normal mucosal lining but poor function (submucous cleft palate),
a separation of the posterior palate (incomplete cleft palate), or
a complete separation of the palate
Cleft lip and palate
A cleft lip and palate is the association of a cleft separating the lip and the palate on one or both sides.
Why do clefts occur?
Clefts are fairly common anomalies, occurring about 1 in 700 children. The lip and the palate are fully formed in the first trimester of pregnancy. Anything interfering with the normal fusion of the parts forming the lip and the palate will cause the cleft.
Many factors may contribute to the clefts, both environmental (e.g. some prescription drugs) and familial. The majority of patients with a cleft do not have anyone in the family who has had one. In the majority of patients, the cleft is not associated with other anomalies, however it can be part of a syndrome, associating other problems.
How does having a cleft lift affect a child?
A child with a cleft can have initially some difficulties feeding. Most children with a cleft lip can be breast fed. In children with a cleft palate this can be more difficult. To help the baby with a cleft feed, a palatal (feeding) plate can be used, as well as a specific feeder, if needed.
Because of the cleft in the palate the baby will swallow more air and it is important to have her/him burp more frequently to avoid the sensation of having a full stomach. It is generally preferable to feed the baby holding her/him up at 45°, almost sitting.
The physician/surgeon caring for your child will provide you with all the appropriate assistance on how to successfully feed your child.
Children with a cleft palate may have ear problems. A small conduit connects the middle ear to the throat (Eustachian tube), allowing the fluid in the middle ear to exit in the throat. This tube may not function well in children with a cleft palate and cause fluid to accumulate in the middle ear, causing decreased hearing and increasing the risk for infection, especially in very young children. For this reason it may be necessary to insert ventilation tubes in the eardrums, to allow the fluid to exit and improve the hearing.
Normal hearing is fundamental for the development of normal speech.
Unrepaired clefts of the palate do not allow closing the air passage toward the nose and therefore cause speech problems. Cleft palate surgery reconstructs the normal anatomy providing the base for normal speech development.
Speech evaluations will be regularly performed and many patients will benefit from speech therapy after the surgery.
Some patients may require another surgery to further improve the speech.
For some patients an orthodontic plate may be required to correct the position of the separated upper jaw.
Depending on the cleft type the child can have missing or smaller teeth. A regular dental follow-up is required as for every child.
Most cleft patients will have teeth requiring re-alignment, and will therefore require orthodontic treatment.
Joining the registry helps improve care for patients
Treatment
Treatment and medical team
The management of a cleft lip and palate requires a multidisciplinary team of specialists, who follow the patient from birth to adulthood. In some cases, the follow-up starts prenatally when a diagnosis is made during the pregnancy. The surgeon caring for your child will explain the treatment plan to you. Since there are different cleft types, different surgical methods may be required to correct them.
Swiss Cleft Lip and Palate Treatment Centers
Interdisziplinäres Craniofaziales Zentrum (ICFC)
Limmat Zentrum für Spalt- und kraniofaziale Anomalien
Interdisziplinäres Spaltteam
Groupe multidisciplinaire des fentes faciales
Arbeitsgemeinschaft für Spaltkinder ASKI
LKG Team Inselspital
Klinik für Mund-, Kiefer- und Gesichtschirurgie
Universitäres Zentrum für Lippen-Kiefer-Gaumenspalten und Gesichtsfehlbildungen
Groupe pour le traitement des Fentes labio-maxillo-palatines
The Registry
There are 3 simple steps to take part in the Swiss Cleft Registry
If you have any questions, please see our Q&A below or contact us
Contact form
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