11 years in diapers, Atuhwere is desperate for surgery

Jul 20, 2015

Divine Atuhwere has never walked, and has not known a life without diapers, as she cannot control urine and stool.

SPINA BIFIDA         CHILDREN        SPINE

She has never walked and has not known a life without diapers, as she cannot control urine and stool. Eleven-year-old Divine Atuhwere was born with a rare condition: spina bifida.

Spina bifida is Latin for ‘split spine'.

According to Martin Kasenda, Atuhwere's doctor at Mildmay Uganda, spina bifida happens when a baby is in the womb and the spinal column fails to enclose the spinal cord all of the way.

Doctors cannot point to a particular cause and believe that it's a combination of factors.

"For example environmental factors such as radiation and heavy metals in mining areas more so mercury, chemicals such as pesticides, nutrition deficiency like folic acid, chronic diseases such as diabetes and hypertension," Henry Bukenya, a doctor at Mulago Hospital explains.

Mothers are strongly advised to adhere to their daily folic acid supplements during pregnancy.

Atuhwere may be stuck in a wheelchair but her dreams are not. She is working hard in school to realize her dream of becoming a medical doctor, and for no other reason but to help children like her - those suffering from spina bifida.

She is in Primary Four at Mary Kevin primary school, Lweza and loves Science and English.

Much as her mother Peace Kwikiriza, a chaplain at Mildmay Uganda, narrates the journey with her daughter, with composure, the pain in her voice cannot be missed.

‘Hospital, our second home'

Unlike Kwikiriza's first pregnancy with Martha, who is now18, she was in and out of school, ill. She had a normal delivery but the baby's forehead was swollen, and the back had a fist-size swelling.

"I was scared. The doctors at Ruharo Health Center III in Mbarara district immediately referred us to Mbarara regional hospital," Kwikiriza recalls.

At Mbarara hospital, they were referred to CURE Children's hospital, Mbale, and Atuhwere was operated on at eight days. According to the doctors, the swelling of the spine had blocked a number of veins, preventing free circulation of the fluids, hence the protrusion (hydrocephalus) on the forehead as well.

"The hydrocephalus was corrected and we were able to return home. Later on however, the hospital became our second home," recalls the mother.

"We had constant reviews as well as minor and major surgeries by specialists. She had two major surgeries at CURE, and a minor surgery at Mengo hospital, but they were unsuccessful."

Costly life in diapers
Despite her troubles, Atuhwere, seated here with her sister and mother, can afford to forge a smile on her face for she is hopeful of a bright future ahead of her. (Photo courtesy of family)


However, the greatest setback was the effect on the nerves and the lower limbs. Atuhwere has paralysis in the lower parts of her legs and cannot control her waste.

As she continues to grow, the urinary tract infections are becoming a chronic issue because children who have spina bifida usually have damage to the nerves that control bowel and bladder function, hence exposing them to infection.

Kwikiriza spends about sh100,000 monthly on diapers. She also has to hire someone to help take care of Atuhwere at school, clean and change her diapers during the day, at a monthly fee of sh60,000.

"Currently, her sister Martha is on holiday and takes care of her but next term she will be in school too," says Kwikiriza. 

The expenses are quite high for the widow, whose job as a chaplain earns her a meager monthly salary of about sh700,000. Her husband passed on when Atuhwere was two years.

Advanced technology
And Atuhwere's endless questions worsen the pain Kwikiriza feels about her daughter's condition.

She has always asks, ‘why me?' says Kwikiriza.

On January 20, 2008, she was advised by specialists at Kadic hospital Uganda, to seek treatment from countries with advanced medical technology.

But Kwikiriza hoped that possibly, there was still a chance for her daughter to get treatment at Mulago national referral hospital. However, another x-ray in 2013 at Mulago was done, and the neurosurgeon specialists too recommended that Atuhwere seeks medical care from a country with more advanced technology.

She contacted hospitals in India, USA and Canada.

Mayo Clinic in the US state of Minnesota accepted to take up her case. They will first make an assessment of Atuhwere's condition on August 8, 2015 with a consultation fee of $7,000 (about sh23m).

It is the results from the assessment that will determine the appropriate type of treatment.

"But so far, the doctors say that much as regaining her walking is really tricky because the nerves were damaged, at least  they can insert an artificial system into her body that can be manually operated to control the urine and stool flow," Kwikiriza explains.

Furthermore, they need two return tickets, accommodation, upkeep and any possible additional medical costs after assessment. The total estimated cost is $224,000 (about sh74m).


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