Restoring Smiles:
Feeding Center Serves More than Nutrition to Children With Cleft Defects In Uganda
Written by: Rhonet Atwiine. Filmed by Richard Mugambe and Ephraim Bukenya.
Saturday, December 21, 2024
For close to 10 years, Damalie Namuwanga has earned a household name in the world of babies with clefts, and palate abnormalities in the communities of central Uganda.
She runs a charity nutrition center purposely for their well-being, and offers mothers support to nurse them.
Every week, about two mothers and children with feeding challenges join dozens of others who reside at The Good Samaritan Nutritional Center. Occasionally, Namuwanga herself combs communities for them.
“I go to rural communities in search of children with cleft lips. So, today, there is another child I have heard about,” she says as we twist through the bends of rural Lugombe, in the Namayumba sub-county, Wakiso District.
At Lugombe, 26-year-old Hannifah Nanyondo delivered a baby girl five days shy of our visit. The baby could not not suckle directly from her nipple. She had a double cleft lip, a split in the upper and lower lips
Hannifah Nanyondo carries her baby, born with a double cleft before she is moved to The Good Samaritan Nutritional Center in Wakiso near Kampala. PHOTO by Richard Mugambe.
“It is something completely new to me,” Nanyondo shares, explaining how it was hard for her to accept the child after birth.
Nanyondo was thus moved to the center. The reason is that the birth of children with congenital abnormalities usually pit mothers against the communities where they live.
Some traditional beliefs and customs attribute the defects to witchcraft, and maternal immorality.
“When my child was born, people accused me of witchcraft. Others said I had committed adultery and my child was born out of wedlock,” shares Christine Nampeera who has lived with her baby at the Nutritional Center for about three months.
Christine Nampeera plays with her eight-months-old son Ivan who at The Good Samaritan Nutritional Center. Ivan is one of the children who underwent correction surgery after obtaining the necessary weight. Photo by Richard Mugambe
-A challenge not to underlook-
According to the World Health Organisation, Cleft lip, and cleft palate are defined as birth defects that occur when a baby’s lip or mouth does not form properly during pregnancy. Clefts can involve the lip or the roof of the mouth (palate).
A recent survey done in five Ugandan health facilities by Smile Care Uganda, a non-profit corrective surgery organization showed that about 1,100 babies were born with the condition in 2022.
It further indicates that the causes range from genetic factors to nutritional influences.
According to Dr. Rose Alenyo, a cleft surgeon at Kiruddu National Referral Hospital in Kampala, much as the condition is treatable by surgery, the unavailability of the services in most rural communities leave people at the mercy of private facilities that are exorbitant.
It costs close to $1000 or about (3.8 million Uganda Shillings) to get this care in private clinics, making it hard for financially struggling rural households.
Also, some children are left to struggle with these conditions through life because parents and caregivers are not aware that the condition is treatable.
“Children with untreated clefts live in isolation, making it hard for them to find friends or go to school, but more importantly, children with untreated clefts can have difficulties eating, breathing, and speaking, and are at risk of severe malnutrition.” Dr. Rose explains.
Damalie Namuwanga carries a child with a cleft palate at the Good Samaritan Nutritional Center. The Child will undergo a feeding routine before they undergo a correction surgery. PHOTO by Richard Mugambe.
-A dedication to restoration-
The Good Samaritan Nutritional Center is also powered by Smile Train, an international cleft charity which empowers healthcare professionals to provide lifesaving cleft care in their own communities.
Built in a rural setting, the center runs about five hectares of farmland where mothers-in-residence grow crops that sustain themselves and the cohort to come.
Namuwanga guides them through proper feeding habits based on locally grown foodstuffs that can be replicated even in their homes. The diet locally known as “Kitobeelo”.
She also monitors the welfare of children, and once they have attained healthy weight through feeding, she alerts the surgeon team which partners with local health facilities to conduct the correct surgery procedure on children.
Surgeons review paper record of children ahead of surgery at St. Andrew’s Health Center, Kyotera district. Photo by Richard Mugambe.
“We have to ensure that they consume the food and increase their weight since many of them arrive weighing less than 2 kgs,” Namuwanga says.
Nampeera’s child is one of those who went through the feeding procedure, and attained the six kilograms prerequisite for surgery which was arranged at St. Andrew Health Center Biikira, a private-not-for-profit Health Center III in Kyotera District, about 200 kilometers away.
The operations are led by Doctor Sis. Najjuka Justina Geraldine who serves as the Executive Director of the Smile Train Uganda.
“When the people we have worked on go back to their villages, they become ambassadors of change, thus preaching to others to come for surgery and stop the negative narratives the community imposes on those with clefts.”
Dr Najjuka notes that the nutritional center augments the surgical operations by studying the life of infants before they are sent to the surgeon’s bench.
Children who don’t fit the criteria by surgery day are sent back to the feeding center.
“We do not want an accident that we would have prevented,” Dr. Najjuka notes, adding that they haven’t lost ever since the project started, thanks to The Good Samaritan Nutritional Center.
Dr. Sis. Geraldine Najjuka plays with a toddler as she briefs mothers ahead of surgery at St. Andrew’s Health Center Biikira in Kyotera district.
The initiative, which has existed for 20 years, has now empowered over 10 plastic surgeons that have served over 16000 patients, at monthly surgical camps in areas such as Kyotera, Arua, Gulu, Jinja, Kampala, Masaka, Wakiso, and Hoima.
It has served over 15,000 children, and 100 adults, including the old.
In Uganda, cleft treatment is catered for on the national budgetary allocation for oral and dental healthcare. However, budgetary allocations are making it impossible to deliver the services especially to rural health facilities.
“We operate on a very small budget that buys medicine for the general hospitals where oral health taps into to have its own medicine. Therefore this leaves conditions like cleft lips unattended to,” Juliet Nabbanja Katumba, Principal dental Surgeon- Ministry of Health.
With congenital issues becoming a common sight in hospitals, Najjuma notes that nothing is being done by the Ministry of Health to curb the problem.
“I appeal to the government to set up a desk for congenital issues like cleft lips. Children who are suffering are many, yet all they have is us and just managing them by chance,” she notes
Mothers tipped on the does and don’ts ahead of surgery at St. Andrew’s Health Center Biikira in Kyotera district. PHOTO by Richard Mugambe.
-The follow-up!-
When the surgery is successfully completed, mothers do not return to the center but are transported back to their communities. Namuwanga follows up with the intention to monitor the patient’s recovery progress and lifestyle.
“I am beyond happy to have a normal baby like any other. It’s unbelievable! I can now proudly show my baby to anyone without any fear or shame,” Nampeera explained to the visiting team from the nutritional center three months after the surgery.
The child will be taken through speech therapy exercises to strengthen the muscles used in speaking and swallowing, as well as techniques to improve pronunciation.
“We provide a speech therapist to the recovered babies to promote language development and improve communication with family members, as well as facilitate their acceptance and involvement in the community,” says Namuwanga says
For Dr. Najjuka and her surgeon team restore smiles on the faces of mothers and their babies that keep the fire of their craft burning.
“The immediate results of this surgery make it the most rewarding in the world. Turning a sad mother’s face into a happy one is what motivates us to keep going,” she concludes.
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