Having a baby is a miraculous and a beautiful journey but any birth defects can kill the joy, cause worry and anxiety. One birth defect is a cleft lip or palate or having a split on the upper lip or roof of the mouth and which in some communities come with stigma.
Tet, 15, from Kawangare area in Nairobi has lived with a bilateral cleft lip all his life. Tet can only speak Dinka and the cleft lip makes it hard to understand what he is saying, as a result, the interview relies on his cousin, Matthew Pok to bridge the communication gap.
Tet ran away from South Sudan with his family when war broke out and has been living at the Kakuma refugee camp in Kenya, before joining Pok to seek medical attention “because we could not find a doctor in South Sudan as this thing is so rare,” explains Pok.
Tet has also never stepped into a classroom due to his condition. Apart from physical challenges like speech, a bilateral cleft lip comes with emotional trauma of feeling “different especially when someone asks him what is wrong with him,” says Pok adding that “it is only we the family that are able to understand him,” but he has dreams of starting school someday.
The Dinka of South Sudan have certain beliefs and Pok explains that having a cleft lip is genetic as “we normally believe your grandfather or dad killed an elephant and it shall happen in your family.”
The financial burden of having corrective surgery saw Pok knocking on many doors until he was directed to Gertrude’s Children Hospital where “one of the Doctors who told me to talk with one of the NGO’s that deal with the condition. I looked for Smile Train Africa” and that evening Tet was admitted at Gertrude’s and the surgery lined up for the following day.
Tet was in the theatre for two hours for the life changing procedure by a team of medics led by Dr Tom Osundwa and though worried Tet is alone with the doctors “I am praying for the best” he says before meeting Tet for the first time after the surgery. He is lost for words. Nyang Tet is later given a tiny mirror and moves it side to side to a catch a glimpse of his new self before issuing a pleasing smiling.
Dr Tom Osundwa explains that the surgery was a “bilateral lip repair where a lip and palate are repaired together. Tet will heal and integrate back to the society perfectly” he says adding that the surgeries can cost almost Sh500, 000 which most Kenyans cannot afford.
Dr Osundwa says he and his team perform about three cleft lip surgeries every week and most patients join school and even finished college and “the program we have with Gertrude’s and smile Train is good because we follow up with the children until adulthood.”
There are no definite causes of cleft lip and palate in children but genetics and environmental factors leading to infections can contribute to the birth defects, says Dr Osundwa who has been performing cleft lip surgeries for the last 18 years.
“Some of the factors like lack of supplementation for the mother during pregnancy and use of alcohol, cigarettes or certain drugs can contribute to development of cleft lip in a child before birth,” explains Dr Osundwa.
Three weeks later, the Standard visited Tet in Kawangware and “there is a lot of change since I left the hospital,” he says. “I now feel better.”
Pok reckons that Tet “is now more confident and the doctors have told me that his speech will get better eventually.”
Tets’ feeding habit has been progressive from soft foods after the surgery to hard foods. He will also be joining school in the next academic calendar after working on speech therapy. In the meantime, Nyang Tet is happy to send photos of his new self to friends and relatives in Kakuma and South Sudan.
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