Closing the gap for cleft parents.
The first days after giving birth to a child with a cleft palate or lip is usually a roller-coaster of emotions and worry. Cleft Friends helps parents and children affected by cleft lips and palates by providing support as soon as possible after birth through a parent support group network of moms and dads of cleft children who have the necessary training and hands-on experience. The good news is that cleft lips and palates are usually fully treatable over time.
Cleft babies come with a number of challenges – feeding being one of the most immediate. Cleft Friends helps parents to find the right bottles and feeding equipment, and also provides access to dietary information. But, it is often a long and difficult journey. Cleft Friends provides support all along the way – for the whole family. Parents, siblings and the cleft child all need emotional support and counselling, in addition to operations and other medical care. Cleft Friends provides referrals to healthcare professionals in the area who specialise in the treatment of cleft palates.
Finding out that your child has a condition of any kind is devastating, and parents often feel helpless and alone. Doctors and nursing staff may find themselves at a loss when trying to provide support and advice. Due to perhaps a lack of education and awareness especially in some rural areas - babies are rejected by their communities because they are believed to be “cursed”. These children need to be celebrated as human beings, and not just ostracised because of their condition. Heléna and Matthew Cullis, whose son Joel was born with a cleft palate, decided to make a difference by helping other parents and medical practitioners by closing the information gap. Together with Madge Blignaut who was born with a unilateral cleft lip and palate they co-founded Cleft Friends in 2009.
Cleft Friends has since grown, and from 2012 we have officially become a project of the Smile Foundation. With the help of Clinical Psychologist Sarah Barnes Ctw at the Smile Foundation, Cleft Friends has been able to train parents in Gauteng, Eastern Cape and Western Cape to support other cleft parents in their immediate areas. These amazing parents have walked the same road and want to share their stories of hope with others. It is the initial contact with another parent that makes all the difference. It sends a message of hope and relief in a traumatic situation. Our Volunteer Support Team include Jillian Hendricks, Biance de Villiers, Fikiswa Nobala, Janette Ayre, Natalie & Sebastian Collins, Riëtte Kruyer and Gloria Mmutle.
We cannot claim to be healthcare professionals but merely offer alternative professional support in that region. We will always claim to be a friend who has walked a similar path, and we will endeavour to point parents in the right direction to get medical advice in their area. Our vision is to create awareness and educate communities about cleft lips and palates. Please contact us. We’d love to meet you!
Parents with cleft lip and palate babies are invited to contact us so we can put them in contact with support in their area. Support Workshops are available in Gauteng, Limpopo Province, Western Cape, Eastern Cape and the Free State.