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Painful wait for death

SUCCUMBED TO HYDROCEPHALUS—Charles

United Nations’ Sustainable Development Goal 3 envisages that all countries in the world, including Malawi, would, by 2030, “achieve universal health coverage, including for family planning, information and education and the integration of reproductive health into national strategies”. However, achieving universal health coverage remains a far-fetched dream for the rural masses in Malawi, especially when it comes to accessing specialist medical treatment on the government ticket outside the country. YOHANE SYMON, in this Friday Shaker, takes us to Mangochi District where some parents are just waiting for their children—who are suffering from hydrocephalus—to die because they have no idea about how to access specialist treatment.

After visiting several public hospitals in search of medical treatment for her 16- month-old daughter, 25-year-old Esnart Kuda of Lukulungwa Village, Traditional Authority (T/A) Chowe, in Mangochi District is back home waiting for her child Asumiya to die.

Doctors have reportedly advised Esnart to accept that her child’s condition cannot be treated in Malawi.

The mother needs to source money for the child to access services outside the country.

Unlike her twin brother Cassim, Asumiya has a condition in which her head is abnormally bigger than those of children her age—such that she cannot sit or walk like children of her age.

Asumiya always cries, perhaps signaling the pain she is going through, a pain visible in her mother’s eye.

To her mother, Asumiya is death in waiting.

“I started noticing that something was wrong when she was two weeks old. She was born normal, like her twin brother, but, after two weeks, she started crying uncontrollably. We tried several medications but she could not stop crying for months,” Esnart said.

After sometime, Esnart said Asumiya’s head started swelling, a condition which, in medical terms, is known as hydrocephalus.

American Association for Neurological Surgeons says hydrocephalus is a condition in which excess cerebrospinal fluids build up within ventricles of the brain, thus increasing pressure in the head.

The disease is more common among children than adults and can easily be treated at an early stage.

Infants who undergo surgical treatment to reduce excess fluid in the brain before the age of one have high chances of surviving the disease, the association says.

But, if untreated, hydrocephalus can cause severe disability and, worse still, death as it causes visual disturbances, walking difficulties, incontinence and reduced conscious state.

“Hydrocephalus is a chronic condition that can be controlled, but usually not cured. But, with appropriate early treatment, many people with hydrocephalus lead normal lives with few limitations,” the association says.

However, Asumiya’s mother has lost hope that her child would ever lead a normal life. The parent does not have money to enable the child to access specialised treatment.

“I have been spending a lot of money on transport to hospitals, only to be told that there is no medicine for my child. They told me that they needed to remove some water from her head but they could not do so because doctors were not available,” she said.

Esnart said she went to Zomba General Hospital, where doctors recommended that Asumiya be operated on by specialist doctors either in Malawi or abroad.

“But they did not help me on how to meet these doctors. I was told that if I would be late to get treatment for my child, I could as well forget that she would survive. They said it was a win-or-lose situation, meaning that the child will either live or die,” Esnart said.

Esnart is back to the village, painfully waiting for a day her daughter would succumb to death.

She has no hope that Asumiya would grow into a woman like her.

While Asumiya is battling for her life, three-year-old boy Charles Sali of Chiwawula Village, T/A Jalasi, in Mangochi died early last month when his parents were waiting for funds to enable the boy to access treatment.

In September 2019, The Daily Times published an article in which mother to the boy, Amina Molesi, appealed to well-wishers to sponsor her son’s medical treatment.

In an interview this week, the mother said, during the campaign for the May 21 Tripartite Elections, there were a lot of people, mainly politicians who made false promises that they would help her raise money for the boy’s treatment.

“I visited several hospitals for help but it was never to be. Most of the support I got was in the form of food, which was not the critical thing I wanted. I wanted treatment for my son and not food. If he were normal, I could have sourced food for my family,” Molesi said.

She is yet to come to terms with the fact that her child died.

“Sometimes I feel like a failure because I could not provide money for his treatment. The amount of money which was being mentioned was huge and that is why I went to the media so that some rich people or the government could help my son. That did not happen,” she said while battling tears.

Molesi and Esnart, separately said they were aware that the government sponsors patients that require specialised medical attention, but such opportunities are accessed by famous or well-to-do people.

“I don’t know how my child can be assisted by the government to get treatment because we only hear of people from towns being sent abroad for treatment. In our village, a lot of people have died due to shortage of medicine in hospitals. There is nobody I know who was sent outside the country for medical treatment,” Esnart said.

She wished there were a way her daughter could be slotted on the list of people earmarked for treatment outside the country.

Asumiya’s case and that of the late Charles are sad examples of problems which health rights experts say need swift attention by the government and stakeholders to prevent cases of more deaths.

Apart from faulting some of the country’s major policies in the health sector, Malawi Health Equity Network Executive Director, George Jobe, urged the government to be transparent in the way it selects people who are referred outside the country for medical treatment.

“I think people are not wrong to speculate that there is favouritism in the way the government selects beneficiaries for medical referrals outside the country because the process is not transparent. We could have loved it if people knew those on the list and how they were selected,” he said.

Jobe said there was need for the government to form a committee comprising civil society members and community representatives such as chiefs to be making decisions on people who are eligible for medical treatment abroad.

“But the best way is to have modern structures with modern equipment to treat patients locally. It is better to invite a specialist doctor to treat several people locally unlike sending patients abroad,” he said.

“At the moment, the scheme will continue benefitting people in urban areas because most local people are not aware of how they can access the services. It is not proper that people should be contributing money for the treatment of patients through the media, yet we have a scheme by the government for the same.”

Joshua Malango

Ministry of Health spokesperson, Joshua Malango, could not tell as to how many patients were on the waiting list for medical attention outside the country.

However, Malango said, annually, the ministry spends K1 billion on sponsoring medical treatment for Malawians outside the country.

“The selection process starts in hospitals and our central hospitals have external referral committees with clear ToRs [Terms of Reference]. We will [always] have outstanding numbers on the waiting list because there are always new patients included on the list,” Malango said.

Malango said children with heart conditions and adults suffering from kidney and cancer topped the list of patients requiring treatment outside the country.

“Currently, Ministry of Health is establishing centres of excellence such as Mercy James Centre in Blantyre, Cancer Centre in Lilongwe and Lilongwe Institute of Orthopaedics and Neurosurgery,” he said.

However, such good initiatives need to be complemented by a transparent process, which is not the case at the moment.

However, the critical question remains whether the ministry is willing to make the external referral programme practically available and accessible to people like Asumiya.

“For me the only wish I have at the moment is to have my daughter healed. It is painful that she cannot eat anything apart from milk. Even drinking water is a problem for her,” she said.

Probably, things could have been different if the authorities had not been dilly-dallying on operationising the Access to Information Act, a very important tool that could empower ordinary citizens to question and solicit information from public officers.

It is estimated that some 120 children suffer from the disease every year and parents report such cases late to hospitals due to beliefs. Some people believe that such children suffer from the disease because their parents watched Gule Wankulu.

In Malawi, the right to have access to information is enshrined in the Constitution but there is no specific Act to support the right’s enforcement.

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