Eden Drasiku was a one month old baby boy admitted in “Mwanamugimu” Nutrition ward in Mulago Hospital. He was suffering from congenital hydrocephalus and severe non-edematous malnutrition secondary to his cleft left lip and palate. He was being attended to by his 24 year old mother, a housewife and his father Mr. Alex Bandua, a 30 year old man. The father was a part-time worker at Kakira Sugarcane Factory in Jinja District (Eastern Uganda). He worked as a sugar cane harvester earning a monthly wage of roughly 46 USD in order to take care of his wife and two other children. The father testifies that life was moving on fairly well with struggles here and there in order to provide for his family until a month ago when Eden, their third child, was born. “We were quite devastated when we saw this because we had not heard of such a condition nor did we expect it.”
He further stated that his wife did not attend antenatal services due to lack of money and gave birth at home with the help of a neighbor because her husband was at work at that time.
After Eden’s birth, the mother could not stop crying every time she looked at her son. Unique regarding Ugandan men facing such a situation, Alex did not give up as he sought help from the nearby hospital in Kakira, but the baby was not well received due to its uncommon condition. Nevertheless, a fellow Christian who had had a baby with similar problems advised him to try CORSU rehabilitation centre in Entebbe. While at CORSU, Eden
was examined and tests done, but he could not undergo needed surgery as he was severely malnourished. The family was then referred to Mulago National Referral Hospital for further management.
At Mulago, the child was assessed by the doctors and they determined a CT scan and ECHO cardiogram to be performed, but the family could not afford them because they had used all their savings on transport moving from hospital to hospital and buying food. At this point Caring Hands Foundation (CHF) was consulted. We immediately came and assessed the social history of the parents who were indeed found to be in need, and later on, the CHF medical team came on board, reviewed the patient, and approved funding for the investigations. The primary team on the ward organised an ambulance to transport the patient to Kampala Hospital where the procedures were successfully done.
The findings from the scan revealed an obstructive hydrocephalus (fluid accumulated in the brain). Due to the massive inter-cranial fluid, the little baby almost had no space for normal brain development. However, there was hope for little Eden as he required shunting of the cerebral spinal fluid followed by plastic surgery on the cleft lip and palate. The cardiac evaluation on ECG/ECHO was normal giving a green light for his much needed operations. Eden and his family still require lots of support to see them all through his major challenge.
Eden’s parents were grateful to CHF and expressed how we had restored hope to their hopeless situation. In his closing remark during the interview, the father stated that he was quite devastated with Eden’s condition, but through the counseling and support they had received through Caring Hands, he now loved his baby and wanted to see Eden treated and had hope for his baby’s future. Special thanks go to the entire CHF team who helped to support Eden. CHF remained on the case until Eden would be discharged from the hospital.
Mawanda John
Social Worker at CHIMAMM