Rheumatic Heart Disease: A Monster Among Malawian Children

Rheumatic Heart Disease is when rheumatic fever permanently damages heart valves in a person.

Children who get repeated strep-throat infections and rheumatic fever are the most at risk to be diagnosed with this heart condition.

In our special report, Zuleika Nanguwo, takes us through the challenges children with Rheumatic Heart Disease face in the quest to access expensive-government sponsored treatment abroad.

Every year, Malawi records an estimated 21,610 new cases. Only ten percent of these make it on the list for consideration for sponsored specialized treatment abroad. In fact, an even far less number on that list actually make it out for the treatment abroad.

“She experienced shortness of breath. We would spend most of the time at the Intensive Care Unit at Queen Elizabeth Central Hospital. She was always on oxygen and when we would get discharged from the hospital, she would not go to school because she could not walk long distances,” says the mother of one patient.

She is a 14-year-old. She underwent surgery in India for Rheumatic Heart Disease. The child had difficulty breathing and could hardly walk for a distance.

The child was traumatized when she was diagnosed with the disease. She also missed school for some time.

Those with this condition experience fever, shortness of breath, chest pain or discomfort, rapid or irregular heartbeat, fatigue, swelling of the stomach, hands and feet among other things.

When a child has recurrent sore throat, there is scarring of the valves, especially those on the left side of the heart which affects their function leading to leaking of the valve hence the disease.

Another child was only five when she was diagnosed with the disease. And everything changed. To make matters worse, she did not make it into the government’s list to fly out for treatment.

Tionge Chaura actually lost her child to Rheumatic Heart Disease. She was only 11 years old.

“I tried so hard for her to make it onto the government list to receive treatment outside the country but I was told she just needed medicine and not surgery. The medicine was expensive and when she ran out of drugs, her legs could start swelling and she would have shortness of breath,” she says.

For public health expert Maziko Matemba, the cases of the disease are alarming and call for urgent and focused attention of the Ministry of Health.

Matemba says because of misplaced government priorities on health, non- communicable diseases have become so neglected that many citizens are succumbing to preventable deaths.

“Some of us have been pushing for one plan, one budget so that all diseases should be treated equally. Currently, as you have seen in our health sector, there are some diseases which are prioritized because either the donor supports them or because they are very common,” he says.

World Health Organization (WHO) statistics show that each year 288, 348 people, mainly children, die of Rheumatic Heart Disease globally.

The majority of these deaths occur in low or middle-income countries such as Malawi.

At least 40 million people around the world are diagnosed with Rheumatic Heart Disease, mostly children and adolescents.

According to WHO, the disease is also prevalent in countries with widespread poverty, more so because in these countries, access to health services is limited and people are overcrowded.

Dr. Yamikani Chimalizeni is a pediatric cardiologist at Queen Elizabeth Central Hospital in Blantyre.

“There are instances where we have got enough medications and some instances when we do not have enough medications in the hospitals. The ones that really need the surgery, especially the older ones, we see if they can benefit from that surgical camp; if they can get new valves.

“Once you have the valve, because most of the time they put a mechanical valve, you need to get medication that will make the blood thin and that medication requires you to have a monthly test to make sure that it is in the range that you want. Most of the hospitals cannot do that test so it is a limiting factor that when you want to send a child outside the country for medication, you have to consider if they can afford to do the test at a private hospital,” he adds.

Malawi has an estimated 230, 470 cases of Rheumatic Heart Disease in children. Each year, 21,610 new cases arise.

One in four children present with cardiac disease at Queen Elizabeth hospital. On average, five to 10 patients a week and 200 to 250 per year are admitted with cardiac failure.

Dr. Chimalizeni says a lack of awareness on the disease is fueling the disease mortality in Malawi.

He says over three quarters of these patients present late hence in severe condition.

Dr. Jonathan Chiwanda heads the non-communicable diseases division in the Ministry of Health.

He says the waiting-list has at least 80 patients with Rheumatic Heart Disease. These are children aged between five and 18.

Treatment for one Rheumatic Heart Disease patient will cost between $8, 000 to $10,000.

“In our capital investment plan, we have earmarked Queen Elizabeth Central Hospital to be the center of excellence for cardiac conditions but we are also looking forward to making Kamuzu Central Hospital, Zomba as well as Mzuzu in the near future. So, this is quite definitive and processes are underway already,” he says.

He says in the short term, the government conducts cardiac surgical camps in the country through government collaboration with Hearts Mission International; an organization in the US but locally working with Blantyre Adventist Hospital. In October last year, nine cases with heart diseases were operated on.

In the long run, he says the government is developing centers of excellence in cardiology, one in Queen Elizabeth Central Hospital and the other at Kamuzu Central Hospital.

For patients paying for their own treatment, costs are known to shoot to as high as K22 million.

At the age of nine, another child we shall call John was diagnosed with Rheumatic Heart Disease. He is now 22.

Doctors recommended that John go to India for surgery but never did.

“We managed to get the two passports; his and his mother’s. We waited to be told when to leave for India. They kept changing dates on when we would fly out but to no avail. We still have not been told if we will ever go outside the country for our son to receive treatment.

As it turns out, there is a killer monster in our midst called Rheumatic Heart Disease that is attacking and killing in a country where majority citizens know nothing about it. And it is largely targeting the fabric of the nation: Children between five and 16. Unfortunately, like most other non-communicable diseases, Rheumatic Heart Disease is not a priority public health issue in this country.

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Last modified on Tuesday, 26/03/2024

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