BUNGOMA COUNTY, Kenya — Sharon Wumocha paid a heavy price for having a child with a cleft lip and palate. Her family cut off contact with her after she gave birth to her son, Travis, last December, saying she was to blame for the condition — and with that, they severed the flow of money she needed to pay for the last two years of her schooling to become a medical engineer. She now lives with Travis’s father at her mother-in-law's home, living as subsistence farmers.
"Because of a child, they abandoned me like that," she said.
This is common in Kenya. Women are often irrationally blamed when a child is born with clefts. People might say the woman was unfaithful to her partner, that she had a failed abortion, that she somehow cut the child’s face, or that she was cursed. Some are disowned by their families and their children labeled as outcasts. Fed up, some women become reclusive, hiding their children from the critical eyes of society. Some abandon their children.
This traumatizing and isolating time is often compounded by difficulties with breastfeeding. The cleft palate and lip can obstruct the formation of the suction needed around the nipple to extract milk from the mother’s breast. Even when the mother can make the breast milk flow, it can squirt out through the baby’s nostrils or spill out of their mouths. It can even enter their lungs. The baby might swallow air in the process, leading them not to want to continue breastfeeding as their stomachs feel artificially full.
After Travis was born with a cleft lip and palate, his mother Sharon's family cut off contact with her, saying she was to blame for the condition.
After Travis was born with a cleft lip and palate, his mother Sharon's family cut off contact with her, saying she was to blame for the condition.
Sharon Wumocha feeds her son Travis using a bottle. Children with clefts often have issues breastfeeding, but specialized bottles can help.
Sharon Wumocha feeds her son Travis using a bottle. Children with clefts often have issues breastfeeding, but specialized bottles can help.
Guidance on nutrition and breastfeeding for babies with clefts have helped ensure that Travis now meets the weight and hemoglobin thresholds for his surgery.
Guidance on nutrition and breastfeeding for babies with clefts have helped ensure that Travis now meets the weight and hemoglobin thresholds for his surgery.
Wumocha taking her son, Travis, for a consultation at the Inter Christian Fellowship Evangelical Mission Dreamland Mission Hospital in the rural town of Kimilili, in western Kenya.
Wumocha taking her son, Travis, for a consultation at the Inter Christian Fellowship Evangelical Mission Dreamland Mission Hospital in the rural town of Kimilili, in western Kenya.
Nutrition-related factors contribute to almost half of all deaths of children under 5 globally. The problem is heightened for children with clefts. A global analysis of cleft surgery records in low- and middle-income countries found that 28.6% of children under 5 were underweight at the time of their surgery — a number above the global underweight prevalence of children under five who don’t have the cleft condition, which is about 13.5%.
Wumocha taking her son, Travis, for a consultation at the Inter Christian Fellowship Evangelical Mission Dreamland Mission Hospital in the rural town of Kimilili, in western Kenya.
The problem is especially pronounced for babies. Given this, babies with clefts need heightened nutritional support in order to ensure they are healthy and able to undergo surgery to fix their cleft safely.
Wumocha, who is 25 years old, tried breastfeeding after Travis’ birth, but no milk came out for days. Other times, when the milk would flow, it would overwhelm his mouth and almost choke him. She grew more and more worried about his weight.
“The first two months, he was just tiny, so when people saw him, they would say: Is he not growing?” she said.
A cleft lip, which is a split in the upper lift, and a cleft palate, a split in the roof of the mouth, is formed if the tissue doesn’t fuse together in the way it should during the fourth to seventh week of pregnancy. A child could have one or the other, or both. About 1 in 700 children globally is born with a cleft lip or palate.
Researchers believe the cleft condition is caused by a combination of genetic and environmental factors, which might include diabetes, obesity, consumption of cigarettes, alcohol or certain medications during pregnancy.
A mother’s own nutrition could be a factor. It’s believed that folic acid supplements during pregnancy may also prevent the formation of a cleft. If a woman starts her antenatal visits late, that is believed to play a role. Folic acid deficiencies are prevalent in Kenya, particularly during pregnancies. Although folate supplements are provided to pregnant women at no cost at government health facilities, their use continues to be low. One study found that about 33% of pregnant women surveyed in Kenya took iron and folic acid supplements at least five days per week.
But it’s a condition that can be fixed. Surgery can restore both the function and appearance of those living with cleft, while other services such as speech therapy, and dental and orthodontic treatments might also be needed.
Joseph Kariuki, program manager for Smile Train in East Africa, explains how the organization's nutrition program supports Kenya's health service to provide care for cleft patients.
Within Kenya, a series of hospitals provide these surgeries for free for families who might otherwise not be able to afford them through a partnership with the international charity Smile Train. Surgery can cost between $800 to $2,500 in Kenya, according to the organization.
Specialized nutrition support
Beyond surgeries, the charity and its partners provide nutritional support to help these children meet a threshold weight of 11 pounds (5 kilograms) at three months old before they can undergo the cleft lip surgery and 17.6 pounds (8 kilograms) before they can undergo a cleft palate surgery. They are also monitored for height and hemoglobin levels, which measures the levels of a protein in the blood that transports oxygen.
Within Kenya, a series of hospitals provide cleft surgeries for free for families who might otherwise not be able to afford them through a partnership with the international charity Smile Train.
After Travis was born, Wumocha was referred to Inter Christian Fellowship Evangelical Mission Dreamland Mission Hospital, or DMH, in the rural town of Kimilili, in western Kenya. There she met with Miriam Nabie, a clinical nutritionist at the hospital and nutrition adviser for Smile Train East Africa, who helped her navigate the process of feeding her baby.
"She started counseling me and she told me ... don't be afraid, you are not alone," Wumocha said.
Within Kenya, a series of hospitals provide cleft surgeries for free for families who might otherwise not be able to afford them through a partnership with the international charity Smile Train.
Within Kenya, a series of hospitals provide cleft surgeries for free for families who might otherwise not be able to afford them through a partnership with the international charity Smile Train.
Her support included showing her special positions to use — different from what children without cleft would use — while breastfeeding to ensure the baby can get the milk. This includes positioning the nipple to the part of the child’s mouth not impacted by the cleft or having the child sit upright while feeding.
Wumocha was also guided on her own diet, in hopes that improvements might stimulate the production of milk. She was given a bottle specifically made for children with clefts and was provided formula because she was having trouble pumping her own breast milk. When her child was older, the hospital provided her with fortified porridge to feed him.
“Malnutrition, in severe cases – it leads to death. It’s very risky to let children stay malnourished without attending to them.”
– Miriam Nabie, nutrition adviser, Smile Train East Africa
UNICEF recommends that children are introduced to solid food at six months. But parents of children with clefts might start this sooner because they are worried about their children’s weight, according to Smile Train.
While it wasn’t easy, Travis is now a pudgy baby, and he recently met the weight and hemoglobin thresholds so that he can move forward with surgery.
Nabie said nutrition staff do what they can to help the mother breastfeed for the first six months. But if that doesn’t work, they teach her to pump the milk. If the quantity of milk she produces is too low, the hospital provides formula as a supplement. As a last resort, cow’s milk can be used only if it's diluted and fortified with nutrients.
Impaired speech is a side effect of cleft, and feeding can play a role in that. The jaw muscles are strengthened when the baby sucks on the breast, Nabie said. Because of this, the hospital also provides children with clefts with a specialized bottle for pumped breast milk or formula, to avoid feeding with a cup and a spoon.
“Malnutrition, in severe cases – it leads to death,” she said. “It’s very risky to let children stay malnourished without attending to them.”
Misinformed, traumatized, and difficult to reach
Through Nabie’s work, she combats a host of misinformation about how a child with cleft should be fed — either from communities or even the hospitals where mothers give birth. Some mothers are inaccurately told their child will never breastfeed, so they are told to give up trying. Some are told to feed the child solid foods soon after birth — which a newborn’s system is not ready to digest.
There are also communities that have deemed it culturally unacceptable for a mother to pump her own breast milk, Nabie said.
“We face all sorts of cultural differences,” she said. “Not many of [the women] would agree to change what the community around them believes.”
The hospital is trying to make these messages on nutrition land with women who already have a lot on their minds because of the stigma.
“Sometimes mothers whose families have rejected them or sent them away because of having a baby with a cleft — they are emotionally unstable. Whenever you provide any sort of counseling, it cannot work,” she said.
Nutritional staff at DMH said they sometimes find the need to repeat the messaging over and over. And some women choose to believe the misinformation over the information provided by their team.
Lenah Bwome, a dietician at the hospital, said that part of their work includes convincing mothers themselves the condition is not a curse.
Lenah Bwome, one of the dietitians working at DMH.
Lenah Bwome, one of the dietitians working at DMH.
Following up with these mothers can also be a challenge — some might come from very rural areas and don’t have telephones. So the hospital has employed a nurse’s aide who works as a community mobilizer who follows up with women who have not come in for their appointments, trekking out to remote areas to bring these mothers into the hospital. She also identifies children born with cleft in communities and convinces mothers to bring them into the hospital.
Dropping weight
Another mother that faced stigma was Valary Namalwa, who became pregnant at 18 years old, while still in school. After her son Elijah’s birth, rumors swirled about the role she played in the formation of his cleft. People said she had an incomplete abortion or, inexplicably, that she ate too many bananas during pregnancy.
But her biggest frustration was breastfeeding. She didn’t produce enough breast milk, and when she did, the milk would squirt out through his nose. He was 5.5 pounds (2.3 kilograms) at birth, but his weight dropped to 4.4 pounds (2 kilograms) within a week.
Namalwa also visited Nabie, who taught her techniques on breastfeeding and pumping. She also gave her formula to supplement breast milk.
After the birth of Valary Namalwa's son Elijah, rumors swirled about the role she played in the formation of his cleft.
Namalwa stayed with her child for three months until his surgery and then returned to finish up her schooling. The grandmother, Bibliana, cared for him after that, feeding him formula from a special bottle. He is now 3 years old, with only a slight scar on his upper lift.
It was a depressing period in Namalwa’s life. She nicknamed her son “Mon Amie,” which is French for “my friend,” because his companionship guided her through that dark time.
Looking at a photo of him before his surgery that rested on her coffee table, his grandmother said: “Look at him now. He has come from far.”
“There is a very big difference between the Mon Amie who was born and the Mon Amie we see now.”
3-year old Elijah is left now with only a slight scar from the cleft surgery he underwent as a baby.
“We face all sorts of cultural differences. Not many of [the women] would agree to change what the community around them believes.”
After the birth of Valary Namalwa's son Elijah, rumors swirled about the role she played in the formation of his cleft.
After the birth of Valary Namalwa's son Elijah, rumors swirled about the role she played in the formation of his cleft.
3-year old Elijah is left now with only a slight scar from the cleft surgery he underwent as a baby.
3-year old Elijah is left now with only a slight scar from the cleft surgery he underwent as a baby.
Changing perceptions
Moses Kwemoi was born with a cleft, and growing up, he was endlessly bullied. He wouldn’t talk in class and would walk around with his hand covering his mouth. He had surgery for his cleft lip when he was in grade school but didn’t have the palate surgery until he was 28.
While he was a bright student, he didn’t think he was worthy of a spot at a university because of the speech impairment he had from the cleft. He thought his destiny was just to take care of cows. After a five-year delay, after finishing secondary school, he finally convinced himself to enroll and is now working as a nurse.
Though Nabie says having cleft surgery at any age will improve one’s speech, she also adds that having the surgery by the age of 3 improves the chances of having “good and clear speech.”
Moses Kwemoi — who was born with cleft — with his family, including his twin boys Adrian and Arnold, who were also born with cleft.
Moses Kwemoi — who was born with cleft — with his family, including his twin boys Adrian and Arnold, who were also born with cleft.
The twin boys received surgery before the age of 3, which improved their chances of having good and clear speech.
The twin boys received surgery before the age of 3, which improved their chances of having good and clear speech.
Moses Kwemoi had surgery for his cleft lip when he was in grade school but didn’t have the palate surgery until he was 28.
Moses Kwemoi had surgery for his cleft lip when he was in grade school but didn’t have the palate surgery until he was 28.
Eager to not have his boys face the same trauma he went through, Kwemoi diligently attended the nutritional sessions with his wife, who had issues producing breast milk.
Eager to not have his boys face the same trauma he went through, Kwemoi diligently attended the nutritional sessions with his wife, who had issues producing breast milk.
Last November, Kwemoi’s twin boys, Adrian and Arnold, were also born with clefts. Eager to not have his boys face the same trauma, he diligently attended the nutritional sessions with his wife, who had issues producing breast milk.
Kwemoi is happy his boys received their surgeries at a young age and will only have pictures to remind them of the cleft.
As knowledge about cleft surgeries trickles through communities, it combats stigma. His community was welcoming of the twins. As a living example, he showed them the surgery was possible and that his boys wouldn’t live with cleft forever.
He is happy his boys received their surgeries at a young age because they will only have pictures to remind them they had a cleft and won’t face the trauma he experienced.
Kwemoi is happy his boys received their surgeries at a young age and will only have pictures to remind them of the cleft.
Kwemoi is happy his boys received their surgeries at a young age and will only have pictures to remind them of the cleft.
Credits:
Reporting: Sara Jerving
Video/photography: Ed Ram
Story editor: Rumbi Chakamba
Copy editor: Nicole Tablizo
Production coordinators: Natalie Donback/Naomi Mihara
Video editing: Alex Cambell/Samantha Keon
Multimedia producer: Naomi Mihara
This visual story is part of Devex's Building Back Health series, exploring how we can build back health systems that are more effective, equitable, and preventive.
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