Cleft lip/palate is one of the most common birth defects, affecting approximately 1 in 700 births in Israel. A cleft is formed early on in pregnancy when the tissues forming the upper lip and/or palate fail to join together. A cleft lip is a resulting gap between the two sides of the upper lip, which can also extend to the base of the nose, whereas a cleft palate is a resulting gap in the upper gum and/or jaw. A baby can be born with both a cleft lip and palate or one or the other.
While a cleft lip is mostly a cosmetic issue, a cleft palate often results in certain feeding and speech difficulties, as well as frequent ear infections or hearing problems, depending on the size and location of the cleft. Clefts are strictly physical defects and are surgically corrected in infancy, while additional surgeries, speech therapy and orthodontic work are also required for many children throughout their childhood and teenage years. When proper treatment is given, cleft-affected children are able to live normal lives.
Technical and emotional support
Having a child with a cleft lip or palate presents families with various technical and emotional challenges. Parents experience fear and concern about the reactions of others to their childs appearance, while also trying to learn as much as possible about their childs condition and treatment options. Guidance and support to families – particularly during the childs first years of life – are essential in helping reduce fears and obtaining necessary professional assistance.
Sfat Halev, a non-profit organization established in 2014, is mainly run by volunteers – parents of children born with clefts. During its first year of operation, it became increasingly apparent that the organization attends to an important and previously unaddressed need in Israeli society, as it is the only organization in Israel providing support, assistance and information in Hebrew to families with cleft-affected children. In 2015 alone, it helped over 400 families, while the number of families who contact the organizations call center increases each month.
Many crucial activities
One of Sfat Halevs main activities is to provide extensive information and educational resources to families, as well as treatment options at the various stages of life. Information is provided through its website and pamphlets. Involvement often begins during pregnancy when parents-to-be discover that their child will be born with a cleft. The Prenatal Program arranges support groups and educational materials already at this early stage.
As soon as a baby is born with a cleft lip or palate, Sfat Halev provides kits containing special feeding gear and accessories to the new parents, as well as one-on-one emotional support. Kits are also supplied prior to each surgery, containing necessary gear to assist the child during the post-surgery recuperation period. Sfat Halev also helps families understand their legal rights and obtain assistance from health funds and relevant government offices. For babies who are born with severe clefts that cant be cared for in Israel, Sfat Halev coordinates and sponsors the travel to and surgery in the US or Europe.
Sfat HaLev also organizes periodic retreats for mothers of children with clefts to provide them with opportunities to form support groups, share experiences, and benefit from educational lectures and fun activities. Furthermore, group events are organized throughout the year for parents and children to enable them to meet in a fun setting and share experiences and advice.
Since medical professionals are often ill-informed about the condition, Sfat HaLev has also taken it upon itself to organize conferences for them, in order to provide relevant information and enable them to most effectively treat these children. The organizations Genetic Research Program studies data from families with multiple occurrences to better identify genetic factors in cleft lip/palate, in collaboration with Meir Medical Center and Bnei Zion Hospital in Haifa.
For more information about Sfat Halev, visit www.sfathalev.org.