She was just nine years old and had to, in a very painfully manner, battle an ailment her family initially thought affected only the elderly – kidney disease.
Born in the village of Nadundo, a farming community in the Mion District of the Northern Region, nine-year-old Pona Tagan sadly succumbed to kidney disease in May, 2023. Her death, doctors say, could have been avoided, or at least, she would have lived a little longer if there had been dialysis machines specifically for children to aid her treatment.
She passed on after her condition got worse, a painful moment for her family. Her mother, Mbayire Tagan, who had been with her throughout her journey, could not hold back her tears when she spoke to The Fourth Estate.
“Pona had great ambitions. Her death was devastating,” Mbayire Tagan recounted. “I was hopeful my daughter would survive, so we sold all we had and even borrowed money to cater for her treatment, only to lose her in the end because there were no dialysing tubes and machines available for children at her age,” she added.
The third of eight children, Pona had aspiration of becoming a surgeon. Her grieving family believes she could have lived a healthier, longer life if there were hemodialysis machines and tubes for children on dialysis.
Her uncle, Philip Nyilyal Laapa, also believes the cost of treatment was too much for the family to bear. “I believe the government can do more for these children by getting their own machines, and the cost was too much,” he says.
Many children like Pona have perished due to the lack of dialysis machines specifically for children.
Feruza Alhassan from Gushegu had been undergoing dialysis for two years, requiring three sessions a week. She had to endure painful procedures with dialysing tubes and equipment meant for adults before she passed away at the age of 15.
Before Feruza’s untimely death in February this year, her family was unable to afford all the sessions, leading them to skip some due to the financial strain.
Dr Rafik Cosmos Yakubu, a Senior Pediatrician Specialist at the Tamale Teaching Hospital, says the situation is frustrating and heart breaking for both parents and health workers.
This is a huge challenge. Sometimes, for the older children, the adult physicians in charge of the dialysis unit are able to dialyse them, but when they are small, they are left to their fate, and unfortunately, a great majority die.
Fate of surviving kidney patients
For children still living and battling the disease, the cost of treatment continuous to drain their parents and families while the cost of treatment continuous to take a toll on their frail bodies.
According to the mother of two-year-old Louis Asante, her son’s condition started when he was three weeks old. From birth, Louis would cry more than usual when bathed or touched in his navel or lower abdomen.
He was diagnosed with a blocked urinary tract at Obuasi Hospital and was referred to the Komfo Anokye Teaching Hospital for surgery to correct the defect. Louis is weak almost all the time and is not as playful like other children of his age.
A 32-year-old Sahadatu Suleman had no choice than to completely abandon her work to take care of her daughter, Nakeyat, after she was put on dialysis to manage the three-year-old’s kidney disease.
Kwabena Boahene, a three-year-old nursery two pupil and 13-year-old Priscilla Antwi both have stories as agonising and distressing as Louis’ and Nakeyat’s.
Kwabena Boahene’s condition hinders his body’s ability to effectively remove waste and excess water from his blood. He now depends on a dialysis machine to perform the functions of his kidneys. To manage his condition, he must adhere to strict restrictions on the amount of food and liquids he can consume.
Priscilla’s condition started when her father, Gabriel Kofi Antwi, first noticed rashes around his daughter’s eyes and nose in 2016. Initially, they tried over-the-counter medicines, but after several months, they sought professional help and received a proper diagnosis. After eight years of treatment, they thought Priscilla’s condition had improved, but it took a turn for the worse, preventing her from attending classes with her peers in Junior High School form two.
Why kidney diseases in children?
It is uncommon for children to be diagnosed with kidney disease, which many erroneously believe affect only adults. But health experts say a growing number of children in Ghana are being diagnosed with kidney disease.
Dr Anima Sarfo, a pediatric specialist at the Komfo Anokye Teaching Hospital, says kidney diseases in children encompass a wide range of conditions. She explained that some are congenital, meaning they are present at birth, while others are acquired, meaning they develop later in life.
Chronic kidney disease is categorised into stages, with stage five being the most critical, known as end-stage kidney disease. Without intervention through hemodialysis or renal transplant, children with stage five kidney disease face the risk of imminent death.
“Since kidney issues in children are less common, resources and data collection are often lacking. Health professionals may not pay as much attention to kidney diseases in children, leading to cases going undetected,” says Dr Beatrice Irene Nyann, a Pediatric Nephrologist at the University of Ghana Medical Centre.
Dr Elliot Koranteng Tannor, a Senior Nephrologist at the Komfo Anokye Teaching Hospital, highlighted that the increasing prevalence of kidney diseases in children in Ghana can be attributed to various factors, including birth defects, hereditary diseases, infections, systemic diseases, trauma and urine blockage.
He also mentioned that, the rate at which kidney disease is increasing in children could also be attributed to the increased use of harmful substances in mining areas, making children the latest addition to a bracket originally perceived for adults.
“The worry is that when we keep exposing ourselves to mercury, it has harmful effects – not only on the kidney, (but also) on the heart, on the liver, on your nerves, in fact on your brain and all,” Dr Tannor says. “I have a lot of patients coming from the mining areas with kidney disease,” he revealed.
“The good news they have is that they are rich enough to find themselves on dialysis or they are working for mining companies that can support them,” he added.
This assertion, to a large extent, is validated by data from the Ghana Health Service (GHS) that points to some regions at the top of their list of kidney diseases being mining areas. In response to a Right to Information Request, data from the covering all 16 regions of Ghana over the past decade confirmed the increasing prevalence of kidney disease in Ghana.
Out of 165,959 cases reported in adults across the country in the last 10 years, 2,656 were children under five, raising cause for concern.
The majority of these children do not survive. The Greater Accra Region had the highest number of cases in adults, while the Ashanti Region led in cases among children under five.
Other factors such as the lack of dialysis centers, the prioritisation of care for adults, while children with critical conditions are often neglected, are rife. According to the research, about 99 per cent of Ghana’s healthcare facilities do not have hemodialysis machines specifically designed for children under five.
Even for children over five, the few available machines in certain regions are intended for adults, yet they are used for children, increasing the risk of death.
Additionally, the appropriate tubes for dialysing children are not available, so adult-sized tubes are used instead, making the already painful and strenuous procedure even more difficult and complicated for children. This leaves them looking frail, tired, weak, and struggling to breathe after each dialysis. The cost of treatment is also daunting for most parents, with each dialysis session starting at about GH¢700.00.
“For efficient dialysis, you would have to undergo three sessions per week, totaling GH¢2,100.00 for one person per week,” says Dr Amina Sarfo of the Komfo Anokye Teaching Hospital.
“In a month, this would amount to GH¢8,400.00. If you need ideal or efficient dialysis, you will have to undergo three sessions per week. This cost cannot be covered by one person’s pocket and is not sustainable,” he said.
Dr Winfred Korletey Baah, a Senior Consulting Physician at the Korle-Bu Teaching Hospital, adds: “Patients also need to buy medications, and many of them have low blood levels, so they have to buy an injection of a hormone called erythropoietin, which is usually produced by the kidneys. This alone can cost people about GH¢1,000 a week.”
For parents like Sahadatu Suleman, Charlotte Pomaa, Gabriel Kofi Antwi, and Hagar Ofori, the emotional and financial toll is overwhelming. With treatment costs soaring, they find themselves navigating a healthcare system ill-equipped to handle the unique needs of children with kidney disease. Despite their tireless efforts, the reality remains stark: without intervention, their children could die or face the prospect of a very diminished quality of life.
“The cost of burden is huge,” says Gabriel Kofi Antwi, father of Priscilla, who has been on dialysis since 2016. “Her medications are not covered by insurance, so I have to pay for every single one of them. I am a father of four, with one of them suffering from kidney failure. Already, I have spent GH¢15,000 on medications over a two-week period, not to mention hospital charges.”
