By Watuwa Timbiti 

Paul Waiswa, 26, and Cissy Namuwaya, 24, sat outside their small rented room in Magamaga B in Mayuge district, lost in thought.

This coldness that engulfed them was triggered by the troubles they had endured over the past four months, which felt like a boulder on their shoulders. The condition of their four-month first born child, Yokosani Lulenzi, drained not only their marital peace but, almost in equal measure, their meagre resources. 

Lulenzi was in his mother’s hands, covered in a stained green sheet; the lower part of his body on her laps and only his face visible.

Amid occasional frail cries, he effortlessly suckled at his mother’s breast — the contortion on his face indicating he did not enjoy it.

A round swollen wound had eaten up the entire heel of his left foot. He looked emaciated and drawn into his skin. Visibly, there was plenty of skin on him than flesh — the wound was sucking him hard.

The genesis of the misery

Waiswa is a peasant maize farmer and Namuwaya, a S.1 drop-out and rural housewife. So, extricating themselves from this dilemma was almost unforeseeable.

“I only get about sh300,000 annually from selling maize. The money is barely enough to sustain us and would not have catered for our son’s complications,” he laments.

The couple’s joy melted away on April 24 at Iganga Hospital upon Lulenzi’s birth. 

“The midwife told me I had successfully given birth, but the child had a strange swelling on his left leg. When I checked, it looked meaty and felt abnormally hard,” Namuwaya says.

Although, this shocked them, they remained optimistic that all would be fine. Little did they know this was just the beginning of their misery!

“The midwife told us to wait and have the orthopaedic doctor examine my child. By 2:00pm the next day, he was nowhere to be seen, so we decided to come back home in frustration,” she recalls with downcast eyes. 

Sitting opposite his wife, Waiswa searchingly looks straight into her eyes with a mild, warm smile, perhaps to cheer her up, lest she breaks down.

Seething in despair, unfortunately, they did not secure a discharge form, so upon return to the hospital, they could not see the orthopaedic doctor without the form. 

“More annoying, the form was not readily available in the hospital. It took hours to get it and to access the doctor who referred us to the theatre,” she narrates.

Namuwaya says upon examining her son, the orthopaedic surgeon told them he could not handle the problem. He referred them to the labour theatre, where they, too, said they could not handle the complication.

Subsequently, they were referred to Jinja Hospital, which worried them more — bleaker days awaited them. “I had no choice, but to move as directed. The baby was crying inconsolably. We moved to Jinja Hospital that very day,” she says in a receding tone, her fingers busy picking nothing from the mat she is seated on.

Puzzling complication

At Jinja Hospital, according to Namuwaya, Lulenzi’s complication proved unfathomable. “The doctors checked the medical books for a similar condition, but none could tell the disease, thus they were not sure of the treatment to administer. They kept telling us the swelling would shrink with time,” she recounts.

At this point, Namuwaya narrates, Lulenzi was a little silent; he cried less, although he breathed heavily like he had a respiratory problem. 

“We were then sent back home and told to return after a month — the doctors said within that time they would have established what the condition was,” she explains.

This was a nightmare. As days trudged on, the swelling intensified and so did the pain.

“Whenever I touched the swelling, he cringed in pain,” Namuwaya recalls, adding: “Over time, the flesh protruded out as the skin peeled off, bursting into a raw wound.” 

This not only meant more pain, but surging despair for Waiswa and Namuwaya. On May 24, they returned to Jinja Hospital where Lulenzi was admitted.

“He was in pain. They gave him several injections, although they did not tell us what they were treating. They told us to wait for a specialist, who would operate on him,” Namuwaya recalls. 

“I realised more and more cases were being operated on, but my son never featured on the list of those awaiting operation,” Namuwaya says amidst heavy breath. “Eventually, he was discharged and we were advised to go back when he made 10kg — at that time he weighed 4.3kg.”

According to the doctors, Namuwaya says, Lulenzi was too small to undergo a major operation.

“We wondered how we could ever feed him to make the required kilogrammes when he was only crying and not taking anything, not even suckling properly due to pain.”

They could not sit back. They feared it would take long to get the weight and yet the pain intensified.

“We tried St. Benedictine Health Centre in Wanyange, Jinja district,” she narrates. 

Instead, they were referred to Mulago Hospital, extinguishing even the little hope they had. They returned home wrapped up in prickly silence, but with dinning questions in their minds, according to Namuwaya.

Blood was now oozing from the wound and upon the advice of friends, they took Lulenzi to Buluba Hospital in Mayuge where they were again referred to Mulago.

Helpless, Namuwaya carried her ailing son back to Jinja Hospital, where the doctors instead accused her of not following instructions — Lulenzi was not yet 10kg.

“What could I do? His condition was terrible. Without any attention given to me, we admitted ourselves. I looked for a bed where the occupant was about to be discharged and put my son there,” she narrates.

The doctors, according to Namuwaya, checked on them two days later and referred them to Mulago.

According to the Jinja Hospital medical director, Dr. Michael Osinde, although the hospital has paeditricians, it does not have paediatric surgeons who could have handled Lulenzi’s condition and that is why the medical workers referred the Namuwayas to Mulago.

Experts scratch their heads

The next day, the baby was given injections. However, just like in Jinja Hospital, the doctors were not certain about the nature of treatment to give Lulenzi, according to Namuwaya.

“A week later, with blood still oozing from the wound, he was given tablets,” Namuwaya recounts.

Sadly, she says, the doctors told them they could not operate on Lulenzi because the wound was connected to the veins.

“They told us the dose was complete and discharged us with some medicine to give to him at home, but his condition was not any better. We were advised to go back after two weeks.”

With this futile chase and pockets running dry, their hope was severely dwindling.

Even more depressing, according to Waiswa, were the words from people who came to visit them. 

“They kept telling us our son could have been treated if we had paid some money to the doctors. Does that mean the doctors deliberately refused to save my son?” he mutters, shaking his head in disbelief.

Indeed, Lulenzi’s life could not be saved. In the night of September 17, as the clock ticked away, oblivious of the misery the family was enduring, Lurenzi breathed his last.

Shortage of paediatric surgeons

Osinde says Uganda has about four paediatric surgeons who are all based at Mulago.

What this means, therefore, is that a child in Kotido with a severe complication can only get specialised attention from Mulago, and not from a regional referral hospital, such as that of Mbale.

And with high transport costs and upkeep at Mulago, which many rural poor cannot afford, the rural poor are indirectly condemned to death.