Muraya has to take blood-thinning medicine daily. The tablets prevent stroke-inducing blood clots from forming in his artificial heart valves. PHOTO I JENNIFER MUIRURI
Lucy Njeri first noticed her son’s frequent sore throats in 2003, but she was not troubled. He was eight years old then. The remedy, she thought, was the good old gargle with warm salty water.
This treatment seemed to work because after a while, her son’s sore throats would fade away.
However, what Lucy did not know was that the seemingly harmless sore throats would be the beginning of the deadly and costly rheumatic heart disease.
Rheumatic heart disease (RHD) is characterised by damaged heart valves. It begins with a sudden strep sore throat. A strep sore throat is the most common bacterial infection of the throat. It is caused by the extremely contagious streptococcus bacteria, which are spread through the air and contact with an infected person. Strep sore throat occurs mostly in children between five and 15 years.
If left untreated, the strep sore throat develops into rheumatic fever. The fever develops two to three weeks after infection with streptococcus bacteria. Thereafter, it develops into rheumatic heart disease, the disease that Lucy’s son, Christopher Muraya, was diagnosed with.
“After the sore throats disappeared, Muraya developed a persistent cough and became too weak to even play with friends,” Lucy recalls.
This alarmed her enough to take the boy to a missionary clinic in Kariobangi, where he was given a dose of antibiotics. However, Muraya did not respond to treatment, prompting Lucy to take him from clinic to clinic in search of an elusive diagnosis.
In a desperate attempt to solve her son’s health riddle, Lucy took him to a VCT centre for an HIV and tuberculosis test.
“I felt helpless. I could hardly sleep at night. I was tired of watching my son suffer and was willing to try anything to get to the bottom of his illness,” Lucy says, tears clouding her eyes.
Both tests were negative, and though she was relieved, Lucy remained disturbed and uneasy because this meant that she couldn’t get help for her son.
“I felt I had done everything I could for him — all what was left was to comfort him and pray for a miracle.”
It was now almost five years since Muraya first fell ill and the mysterious disease had taken its toll. His breathing was laboured and any movement was a chore for him. He could not attend school or play with his friends. He also had a poor appetite and had become weak.
It was only after a friend directed Lucy to Baraka Medical Clinic, a charity in Mathare run by German doctors, that Muraya’s condition was finally diagnosed. The doctors at the clinic informed Lucy that her son had a “serious” heart condition. Treatment would cost of Sh3,500. However, she could not raise even a fraction of the amount.
“It almost killed me to know that I couldn’t afford this kind of money — God had finally answered my prayer for a diagnosis, yet I couldn’t afford the treatment. I have never been so frustrated in my life.”
Lucy, a single parent, makes a living by collecting plastic bottles at the Dandora dumpsite, which she then sells to factories for recycling. The most she makes is Sh130 a day, which is too little to cater for her family’s needs and pay for the drugs that keep her son alive.
With no one to turn to, a dejected Lucy took her sick child home and waited for the worst.
A few weeks later, a programme on a local vernacular station, Kameme FM, caught her attention, and renewed her hope for Muraya’s treatment. The station was hosting the Kenyan Heart National Foundation (KHNF), which happened to be discussing the symptoms of rheumatic heart disease.
Muraya’s Sunday school teacher was listening to the programme as well and recognised the RHD symptoms as the ones he had observed in Muraya. He immediately called Lucy and offered to take the child to the foundation, which assists poor heart patients to get treatment.
Unfortunately, Muraya had already developed rheumatic heart disease, which is incurable and fatal if not managed well.
His heart valves had already been damaged and surgery was needed urgently to save his life. To Lucy’s relief, KNHF offered to cover the cost of the treatment required to prepare Muraya for surgery, as well as the surgery itself. It cost Sh500,000, an amount that Lucy wouldn’t have been able to raise.
The surgery, which was performed in 2008, replaced Muraya’s damaged heart valves with artificial ones and mended those that had not been damaged beyond repair.
The surgery was successful, but Muraya has to be on medication for the rest of his life.
He has to take blood-thinning medication every day to prevent stroke-inducing blood clots from forming in his artificial heart valves. A month’s dose of the thinning medicine (Waarfarin) costs Sh600. He also requires a monthly penicillin injection to protect his other heart valves from getting infected. This costs Sh100.
This amount might seem little to many but to Lucy, it is an overwhelming amount, bearing in mind that she has to pay rent, cloth and feed her son, and cater for her basic needs as well.
“It hasn’t been easy. There are days when he goes without medication because I’m unable to raise the money,” Lucy says. When he has taken his medication, Muraya is an energetic and friendly 17-year-old who enjoys playing football with his friends. But he is a different person when he misses a dose.
“I become weak and my legs swell and ache. I also feel exhausted, so I can’t go to school or even move around,” says Muraya, a Standard Eight pupil at James Gichuru Primary School, in Dandora.
He says that as long as he is on medication, he can do everything other children his age can, although he has to be careful not to strain himself.
“I enjoy playing football with my friends, but I can’t run for more than two minutes at a time. I have to take short breaks because I get exhausted and run out of breath easily,” Muraya explains.
He would like to be a cardiologist so that he can help heart patients, especially children. Lucy says she shared her story so that other parents can learn from her ignorance.
“Don’t take chances like I did — had a known that a sore-throat could be the beginning of such a serious condition, I would have taken my son to hospital immediately.”
Rheumatic heart disease can be prevented.
According to the World Heart Federation, rheumatic fever/rheumatic heart disease is a leading cause of cardiovascular ailments, which often lead to death in developing countries. However, the disease is rare in most developed countries.
Medical researchers say that the disease is common among the underprivileged because of poor living conditions.
Overcrowding makes it easier for the airborne and contagious disease to spread. Moreover, poor people lack money to seek early treatment or even proper medical care. They usually use ineffective home remedies to treat strep sore throat, which can only be cleared using antibiotics.
No comprehensive studies have been done on the prevalence of the disease in Kenya. However, the Kenyan Heart National Foundation (KHNF) estimates that about 200,000 children develop rheumatic heart disease in the country every year.
Dr Naomi Gachara, a paediatric cardiologist at Kenyatta National Hospital, says the cost of treating RHD is beyond the means of the average Kenyan.
At the Kenyatta National Hospital, one heart valve costs Sh150,000 for those covered by the National Social Health Insurance Scheme. Those without health insurance cover have to part with no less than Sh200,000 for the valve. In private hospitals the cost is even higher. For instance, at Karen Hospital a heart valve costs Sh500,000.
This does not include other hospital costs such as bed, doctor’s fee, and other charges.
Dr Gachara notes the stark contrast between the cost of treating patients at the strep throat level and that of treating and managing RHD.
“Strep throat infections clear within 10 days when treated with penicillin. A penicillin dose costs between Sh20 and Sh40 at government hospitals. It is cheaper to treat and clear the infection at the strep throat stage,” she says.
KHNF chief executive officer Elizabeth Gatumia says there are 60 children on the foundation’s waiting list. They are waiting for funds to cover the cost of heart surgery to replace or repair damaged valves.
While they wait, their hearts continue to degenerate. Prevention, Ms Gatumia says, is the only way to avoid this serious disease.
“Rheumatic heart disease is preventable but its consequences are disastrous and lead to a slow painful death,” she says.
Most of the patients that the Kenyan Heart National Foundation has helped have not lived to see their 30th birthday. However, Ms Gatumia explains that with good nutrition, proper medication, hygiene and reduced exposure to new infections, an RHD patient can live much longer.
The Kenyan Heart National Foundation can be reached on: Tel: +254 2 4452214 / +254 3005084, Cell-Phones: +254 729625741 / +254 735408784, firstname.lastname@example.org www.kenyanheart.or.ke
For those who want to help Muraya, please use these contacts and make sure you specify that you want to help Muraya with his medications.
You can reach KHNF through Elizabeth on:
Personal Mobile Nos: +254 733907112 / +254 726143317
Personal Email: email@example.com
Office Tel: +254 2 4452214 / +254 3005084
Office Cell-Phones: +254 729625741 / +254 735408784
Office Email: firstname.lastname@example.org
Also if you want to reach Muraya’s mum-Lucy for ADDITIONAL HELP, email me at email@example.com and I will give you her cell phone number.