Janat’s journey with spina bifida and fistula

 At just 15 years old, Janat's life has been a testament of resilience and determination.

Born with spina bifida and fistula, Janat has faced numerous challenges, but her spirit remains unbroken.

“I am blessed to have caring parents who haven’t given up on me,’’ Janat said, her voice filled with emotion.

“By God’s grace, I will overcome this, return to school, and become a gynaecologist surgeon to help others like me.’’ She breaks into tears remembering how she dropped out of Primary Four, where she was one of the top pupils. “It’s sad to see my classmates pass their exams and join secondary school, while I’m still struggling,’’ she recounts. 

Her journey has been marked by pain and struggle. She was born with a hole in her spine, which was repaired at Kamuli Mission Hospital when she was just a week old. However, complications arose a few years later, leaving her with chronic stomach pain, unable to sit or stand. 

Despite the challenges, Janat’s parents have been her rock, supporting her through every step of her journey.

“We’ve faced public ridicule, overcome myths, and struggled to make ends meet,’’ her father said.

“But Janat's strength and resilience inspire us every day.’’

Janat’s medical records reveal a complex history of fibroids, spina bifida repair, nerve damage, which affected bladder control, and leakage of stool.

 Her parents have been referred to the Rotary Hospital in Entebbe, but poverty has hindered their ability to access specialised care. 

“We need a special hire to take us to the hospital, but we can’t afford it,’’ Janat’s mother says, tears welling up in her eyes. 

“We struggle to buy pampers, soap, and extra skirts to maintain hygiene and sanitation.’’

Dr Fred Duku, the district medical officer, emphasises the need for specialised neurosurgery at Mulago or Children’s Hospital Entebbe.“Namutamba’s case is common, especially among pregnant mothers with low folic nutrients,’’ Dr Duku explains.
 “We urge mothers to visit antenatal clinics, where they will receive folic acid to prevent such complications.’’

As Janat looks to the future, her determination remains unwavering. 

“I want to be a doctor, specialising in women’s health and fistula repair,” she says, her eyes shining with hope. “I want to help others like me, who are suffering in silence.’’

Janat is seeking assistance from well-wishers to help her overcome her health struggles.

WHO SAYS

Spina Bifida

According to WHO, spina bifida is a type of neural tube defect (NTD) that occurs when the spine and spinal cord do not form properly during early pregnancy. It is a birth defect that can cause physical and neurological disabilities, ranging from mild to severe, depending on the size and location of the defect.

Causes: A deficiency in folic acid before and during early pregnancy is a significant risk factor. Other causes include genetic and environmental factors. Obstetric Fistula_ Is a hole between the birth canal and the bladder or rectum caused by prolonged, obstructed labour without timely medical intervention. According to WHO, it is a serious childbirth injury that leads to chronic incontinence and severe social and emotional consequences.