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Life with a cleft palate

In the majority of children, the palate is also affected by the cleft, in addition to the lip. The cleft lip is ideally closed in a first operation between the fourth and sixth month of life; the second operation to close the palate should also take place in the first year of life.

But time and again we see patients in our project countries who have lived with cleft palates for many years. Because once the obvious flaw has been removed by the lip operation, the parents sometimes no longer see the need to close the palate. The children then suffer from severe impairments for their entire lives.

Like sixteen-year-old Sifa. The girl is very shy, cannot speak properly. As a baby, her cleft lip was closed. The surgery was not done well, as the scar on her face shows. But what’s worse is that the important palate surgery was never done. Sifa comes alone to seek help from our mission in Rwanda on its penultimate day. We don’t know how she found out about our offer of treatment. Her cleft palate is huge, about four centimeters. The procedure is not easy: The larger the cleft, the greater the risk that the suture will open again. For our two volunteer project leaders, Dr. Dr. Oliver Blume and Gunther Au-Balbach, an intervention such as this so shortly before their departure is a major challenge. But everything goes well. The two experienced oral and maxillofacial surgeons are relieved when Sifa cheerfully shows up for a check-up on the last day before their departure. At their farewell she speaks her name – for the first time in her life.

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Farewell picture: Sifa with Oliver Blume
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An untreated cleft palate can cause many problems

If a cleft palate is not treated or treated late in life, many problems for the patient are the result. Due to the lack of separation of the mouth and nasal cavity, the interaction of the lip, tongue and palate muscles is disturbed. In addition, there is a change in the position of the tongue, which shifts backwards into the cleft. Serious functional disorders are the result. Swallowing and breathing, basic pronunciation and the sound of the voice are affected.

In babies, breathing and feeding problems can become life-threatening. Food getting into the nose is still a handicap later in life, and is associated with shame for the affected patients.

The disturbances in sound formation result in a delayed language development. Hearing deficits caused by chronic inner ear infections can make learning to speak even harder. Due to their unclear pronunciation and an often nasal voice, the children are often stigmatized as disabled.

In order to promote language development in children, we offer language and functional therapy wherever the structures in our project countries allow. The same principle that applies for the surgeries also applies here: the earlier the therapy is started, the more effective it is.

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Again and again we encounter patients like Sifa, whose cleft palate was not treated when she was a baby. Once the obvious flaw has been remedied with the lip surgery, the affected families sometimes “save” themselves the second procedure, which is often associated with long travel times and, as a result, loss of earnings. The longer a cleft palate remains untreated, the more serious the consequences.
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Five good reasons to donate for cleft children
We dedicate ourselves to a single cause: Treating children with cleft lip and palate. In our project countries, we offer direct medical help for the needy patients and their families. Measurable in the number of surgeries offered.
Whereever the situation in our project countries allows, we fund additional necessary followup therapies beyond the surgeries, such as speech therapy or orthodontics.
Every treatment is documented by our doctors in the project countries in our patient database and verified by us. This way we know that the donations entrusted to us are used properly.
Our goal always is to build sustainable, independently functioning structures in our project countries. To achieve this, we build up long-term partnerships and keep in close touch with our local partners.
The German Central Institute for Social Matters (DZI) certifies that we use the donations entrusted to us responsibly and properly manner. We have held this certificate continuously since 2012.
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From our projects
The story of Maui, cleft child from Colombia
Our new project to help children with cleft lip and palate in Colombia begins with a very unusual case. Maui was born with a cleft lip and palate. His parents belong to an indigenous people and do not know how to get him the help he needs. By a happy coincidence, Julia, a Swiss woman living in Colombia, is a neighbor of the family and offers to help. In search of treatment options, she comes across Deutsche Cleft Kinderhilfe.
Video: Impressions from Bolivia
The parents of our cleft children are always full of gratitude. When their child is born with cleft, they often do not know what to make of the malformation, much less that it can be treated. And even if they do - most of our little patients come from the poorest of backgrounds. Their parents could never afford the operation. It is an unimaginable happiness for them to learn that their children can receive qualified treatment, and free of charge even. This wonderful, touching film from our Bolivian aid project captures these special moments of happiness.
Video: Impressions from Pakistan
This film, made for our Pakistani partner organization, the Al-Mustafa Welfare Societey, by the father of one of our patients, shows scenes from our work in Karachi. From here, our senior surgeon Prof. Ashraf Ganatra treats cleft children from poorest families. He operates the children from Karachi at the Al Mustafa Medical Center. In order to reach the many needy families living outside the city, he also regularly heads out to local provincial hospitals to treat cleft patients there.