Remarkable Journey: A Mother’s quest for Cleft Care in Jimma, Ethiopia
By Abdo Husen, Senior Global Surgery Fellow at Operation Smile & Program Manager at Operation Smile Ethiopia
“I had a normal pregnancy,” says Bizunesh Gawo, 32, a mother of four as she recounts her motherhood experience with her last born — a boy named Meseret. Bizunesh lives in Dita, a rural and remote village around Bonga town in the southwestern region of Ethiopia.
Meseret was born with a cleft lip and palate condition. Consequently, he was unable to breastfeed and would constantly cry out of hunger. Bizunesh was worried about her baby’s condition, but did not know what exactly it was. Worse still, is that her relatives and neighbours would gossip about her son. In fact, one of them said to her, “Why are you suffering with this child? God has already blessed you with three children. You have to let him go back to his Creator. God is punishing you for a sin you must have committed while you were pregnant.”
This stigma and ostracization made her feel a deep sense of shame. She would have sleepless nights as she contemplated fleeing the area — her home, where she had lived her entire life.
After days of crying and feeling helpless, Bizunesh decided to go back to the health centre where she gave birth. They referred her to Bonga Hospital for further treatment. Bizunesh shared her story:
“I was told to go to Bonga Hospital even during discharge from the health centre after giving birth to my child. However, I didn’t pay attention to the advice as I was scared at the time.
I went to Bonga Hospital on foot with my husband Mengistu. After an hour of tiresome travel, we arrived at Bonga Hospital where our child was seen by a doctor. The doctor was extremely concerned about the baby’s wasted and emaciated body, who was even getting tired when crying as he had not been fed properly for over three months. The doctor explained to us the condition of our child and informed us that it can be treated with surgical care. We were so relieved. However, our hopes began to fade away when he said the treatment was unavailable in their facility but were soon relieved when he said it is available for free at Jimma Hospital in partnership with Operation Smile Ethiopia.
At this point, the only problem was how to get to Jimma. My husband borrowed some money which he gave me to travel by road to Jimma by myself as he had to return home to look after the other children.
After a day of my visit to Bonga Hospital, I arrived in Jimma that Friday morning and asked for the location of the hospital. It was not that difficult to find as the guards directed me towards the Cleft Centre after seeing my child.”
After screening by the nutritionists at the Comprehensive Cleft Care Unit at Jimma University Medical Center (JUMC), more commonly known as Jimma Hospital by the locals, Meseret was found to have a unilateral cleft lip and palate. Additionally, he was underweight at only 2.7 kg at the age of 3 months. He had visible wasting, sunken eyes, a bony face and visible ribs through the skin. In addition to this, he had persistent diarrhea and vomiting. He was diagnosed with severe acute malnutrition with medical complications.
Baby Meseret was admitted to JUMC Pediatrics Departments Nutrition Rehabilitation Unit (NRU) where he received inpatient medical and nutritional treatments. Initially, Meseret showed signs of stabilization and stayed at the NRU for 28 days. After that he started to develop fast breathing, cough and grunt which was indicative of aspirational pneumonia.
“At a time when my child started to show sign of improvement, he started coughing and got sicker. That is when the doctors took him to the other room,” said Bizunesh. The ‘other room’ was ICU where he was put under intensive follow up and assisted breathing.
Meseret stayed in the ICU for eight days and was transferred back to NRU as his condition improved and the cough subsided. Four days later, he started to develop fast breathing and cough again. He was then rushed back to the ICU where he stayed for another three days before returning to the general ward after getting stabilized.
After 45 days of admission, Meseret was discharged from Jimma University Medical Centre Nutrition Rehabilitation Unit to continue with an outpatient therapeutic feeding program.
Over the next three months, Meseret was closely followed by the nutrition team. During this time his nutritional status improved, and he gained enough weight. He was then fit for surgery.
“I was so relieved when I was told my baby could now get surgery. The support for transport that I received from Operation Smile continues to make my life easier,” Bizunesh shared.
Finally, Meseret received his first lip surgery on February 16, 2023, and stayed at JUMC for one week. After counselling and the provision of nutritional supplies, Bizunesh was advised when to return before they were discharged. Now that she has established a family-like relationship with the nutritionists, they maintain contact and carry out follow-ups through phone calls.
Nutritionists worried when Meseret and his mother failed to visit Jimma for months. They tried to reach them, but they were inaccessible by phone. During this time Bizunesh had a personal matter that distracted her from attending follow-up visits. After months of lost contact with the nutritionists, Bizunesh returned to Jimma to seek the second surgery for the cleft palate on January 13, 2024. Meseret underwent palate surgery successfully at 18 months old.
“Meseret looks different now,” says nutritionists Mohammed and Tolera while checking his weight and taking measurement of his heights. “He is now a 9.1 kg healthy baby.”
The stigma Meseret’s mother Bizunesh went through is still rampant in rural Ethiopia. This calls for concerted effort by all stakeholders to bring social change. Bizunesh embodies the undying spirit of mothers of children with cleft conditions. She overcame multiple barriers and was finally able to provide the care her child needed. It is not without compassionate care of comprehensive care providers that Meseret is able to live a healthy life and have a brighter future.
Not every child with a cleft condition can get the care they need like Meseret. Access to comprehensive care is limited in Ethiopia. The focus given to the unique needs of children with cleft conditions is also limited in the national nutrition programs. Reaching the available care is also another challenge to a lot of children due to different social and economic factors including conflicts. This calls for all actors to work beyond surgical care through integrated child health programs. For more information, visit www.operationsmile.org
Abdo Husen is program manager at Operation Smile Ethiopia and a senior global surgery advocacy fellow at Operation Smile.
