TSEGANESH’S STORY
Tseganesh, who is 6 years and five-month-old, came to Tibebe Ghion hospital, Bahir Dar to get cleft lip surgery with her father and her mother from West Gojjam.
Her mother tells us about her birth and the difficulties she faced with breastfeeding. “When she was born, they told me she had this disease, it was hard, I started crying, and I didn’t understand why, I was so excited to have a daughter, but she had trouble sucking, so they had to feed her with the other milk.” Babies with cleft lips often struggle to breastfeed as they cannot create a seal for suction, this means that the child can become undernourished, which is not only dangerous for their health but also incredibly distressing for the parents. Project Harar runs breastfeeding awareness courses and provides nutritional support to families to alleviate the difficulties until surgical treatment is an option.
“The Treatment given to my child is good. By seeing our experience, the others with this condition who have not been treated and are currently hidden in the village, will also get this treatment. In the future, I will serve as an ambassador of this organisation to transmit the information of this service in my kebele as well as the woreda in which I live.”
Tseganesh’s mother goes on to explain to us the stigma and isolation that her daughter has experienced as a result of her cleft condition. “My child is afraid of speaking in groups because of being teased by other children. I am so sorry for my child because children avoid playing with her and because she is always alone. Also, my daughter is always upset and feels sad because her friends tease her and call her names, such as ugly girl.” Children with facial difference are commonly ostracised from society, having significant implications on their mental health. Receiving surgical treatment is not only crucial for improving their physical health, it also has a positive impact on their social wellbeing, enabling them to go to school and make friends. However, Project Harar recognises that more needs to be done than just providing treatment. Raising awareness and reducing stigma is of equal importance, to ensure that all children, regardless of facial difference, are valued and celebrated members of society.