Noma: Deadly disease ravaging children of the poor

MOTUNRAYO JOEL writes on Noma disease, an oral disease that maims 140,000 children annually

FROM a far distance, one could not miss the cheerful demeanour and disarming innocence of four-year-old Laraba Haruna.

Wearing a dirty and torn dress, the little girl looked unwell. But she did not have a care in the world as she laughed at something her mother said to her. That was when the condition on her face was exposed. Laraba did not look like every normal girl of her age.

Nowadays, the once bubbly four-year-old, who used to be the delight of her mates, is mostly left on her own or with her dotting mother as her only playmate. Her once close friends and family members have since shunned her after a significant portion of her once beautiful face became disfigured by what they had termed a ‘strange disease.’

Young Laraba’s plight started a year ago after she contracted a peculiar oral disease – Noma, which affects mostly children under the age of six.

Noma disease is an oral infection that is sometimes described as the ‘face of poverty and malnutrition,’ as it affects mostly children in rural communities with high levels of poverty, malnutrition, poor oral hygiene and health care.

The spread of the disease causes the disfigurement on the face of the victim, which is a cruel reflection of poor conditions of many families, especially in rural areas of Northern Nigeria.

A general surgeon, Dr. Adetunji Adeniyi said Noma — a complex disease medically referred to as Cancrum Oris — is a gangrenous infection affecting the face.

Within two days of the appearance of swelling in the cheek, which is often accompanied by gingivitis, the infection envelops an area of the cheek, gums and facial bones, Adeniyi said.

The term Noma originates from the Greek  word numein meaning ‘to devour’ Adeniyi explained that Noma affects “mainly children under the age of six caught in a vicious circle of extreme poverty and chronic malnutrition who suffer unimaginable pain, discomfort and social exclusion from their communities.”

The affected children are mostly malnourished, exposed to infectious diseases, and have no access to potable water and dental hygiene.

Narrating her daughter’s ordeal to SUNDAY PUNCH, Laraba’s mother, Hassana, said it started after one of the festive seasons in the small community of Makwa in Sokoto State, Northern Nigeria.

She said, “My daughter first began complaining of headache, then her complaints grew worse.  She battled with constant fever and pains around her mouth region. We noticed that her mouth was turning black. After some time, the pain became unbearable for her. That period was so traumatic. She would cry herself to sleep. I don’t know how I have been able to survive seeing her go through this condition and pain every day.”

At the onset, Hassana, a fish net maker in Sokoto State, said she had never heard about Noma disease and so, could not tell what was causing the growing pains her daughter was experiencing.

“I did not know what was affecting my daughter’s condition. Our friends and family members recommended herbs, which I constantly used, but they didn’t work,” she said.

One morning, Hassana said her worse fear came true when she noticed a huge growth on her daughter’s mouth.

“It was as if the growth happened over night. Different thoughts kept racing through my mind, and I wondered if someone had placed a curse on my daughter or if I had offended anyone.  I knew she had a lump, but I didn’t take notice of it on a daily basis. But looking at the growth on my daughter’s cheeks that morning felt as if someone stabbed me with a knife. I still remember breaking down and sobbing like a baby.

“My daughter’s pains intensified greatly. She couldn’t eat or drink. Before the growth, she had been managing to eat little meals. Taking her out is still a nightmare; people stare at her as if she has faeces and sores all over her body. I’m in greater pains than she is; I keep asking myself why it had to be my daughter.”

A deadly scourge

It is the same question on the lips of the mother of four-year-old Badamasi Mustapha, who is also battling with the disease.

According to the mother, Shafa’atu, Badamasi developed the disease two years ago during a religious fast. The symptoms the four-year-old exhibited  were similar to Laraba’s — fever and mouth ulcer.

She said, “My daughter can’t eat; she barely manages to drink water. She can’t even play with her friends.  There are days when she cries nonstop. I wish I was the one that contracted the disease and not her. I only recently heard about the name ­— Noma, I didn’t know the root cause of the fever and mouth ulcer at the early stage of the disease. I blame myself for the pain she is going through.”

Farida Abubakar, who is a year and a half years old , also contracted Noma disease very early in her young life. She was barely 11-months-old when her mother, Shafa’atu, who is based in Kebbi State, noticed that some flesh around her mouth region was falling off.

The mother of two said, “She first began to cry about much pain in her head, and then it progressed to fever and blackness of the entire mouth. Later, I noticed that some parts of her mouth began to peel off. Since then, it has been a period of pain and more pains. She has lost so much weight. I feel so sad. I can’t bear watching my daughter crying, knowing I can’t take the pains away.”

Three-year-old Rabi Iliya is also a victim of Noma disease. He developed the disease last month.

His mother, Nasara, said her son was placed on drips to prevent him from dying because he couldn’t eat, “I carried him from one hospital to another, but the doctors didn’t even know the cause of his illness so they couldn’t administer drugs or injections.”

Similarly, two-year-old Rabiatu Bello is a victim. Her mother, Hasiya, a cook based in Sokoto State, said her daughter began complaining of frequent headache and pains in her mouth region a year ago.

The young mother recollected, “I gave her herbs and locally manufactured pain killers but the pains didn’t subside. It got to a point that I became fed up. She would cry of pains, but there was little I could do. I was helpless.  I just kept looking for ways to ease her pain. I considered taking her to a proper hospital for checkup, but I don’t have much money, I’m a cook and a mother of seven children. What could I have done?”

With no formal education and struggling to make ends meet for her large family, Hasiya said she was helpless and was at a loss on what to do about her daughter’s condition. “Maybe I am being punished by my enemies,” she said with uncertainty.

Although fresh cases of Noma disease are seen predominantly in children ages 1-6 years, late stages of the disease, are not uncommon in adolescents and young adults.

This was the case of 15-year-old Aliyu Idi who lives with his parents in a mud house 10 kilometres away from Rabi’s residence in Gidan Madi, a village in Tangaza Local Government Area of Sokoto State.

His mother, Hauwa’u, said her son contracted the disease two years ago.

Oblivious to the symptoms of Noma disease, Hauwa’u said she treated her son’s ailment with herbs.

She said, “I kept taking him to herbal doctors who claimed they could heal him. Apart from the fact that I believed they could heal him, I could not afford taking him to the city to visit a proper medical doctor. My son would cry for days till he had no more tears in his eyes. He could not eat for days too. We are poor and cannot afford to eat good food regularly, but I don’t pray for any child to have the disease.”

Adeniyi said Noma disease could result from acute malnutrition and chronic endemic diseases such as measles, whooping cough, and poor oral hygiene.

Experts also say the disease begins with ulcers in the mouth, which is prompted by extreme poverty. If the condition is detected in the early stage, progression can be prevented with the use of mild antibiotics and immediate nutritional rehabilitation.

A Consultant Paediatric Surgeon, Dr. Basheer Jabo, also described Noma disease as “a poly microbial infection affecting soft tissue of the face involving the lips, nose and part of the eye lid.”

He noted that it occurs in malnourished children in areas where sanitation and cleanliness are lacking.

Jabo added, “Noma occurs when the immune system is compromised leading to the destruction of the face, especially the mouth and cheek. The disorder most often occurs in young, severely malnourished children between the ages of two to five. Often they have had an illness such as measles, scarlet fever, tuberculosis, or cancer. They may also have a weakened immune system.”

The surgeon said the disease was caused by several factors, including a background of illness in a child, bacterial infection of the gum that spreads to affect soft tissue of the face, lips and nose resulting in necrosis and tissue loss.

He said, “Noma causes sudden, rapidly worsening tissue destruction. The gums and lining of the cheeks become inflamed and develop ulcers. The ulcers develop a foul-smelling drainage, causing breath odour and an odour to the skin. The infection spreads to the skin, and the tissues in the lips and cheeks die. The process can eventually destroy the soft tissue and bone. Eventual destruction of the bones around the mouth causes deformity and loss of teeth. Noma can also spread to and affect the genital.”

A Chief Dental Officer, Lagos State Health Service Commission, Dr. Femi Orebanjo, said Noma disease kills over 100,000 people every year globally because many of the victims do not get proper treatment.

He said, “The victim’s open wounds will not allow nutrition to pass through without pain. And without proper nutrition, children will die. The disease entity leaves the victim with a facial deformity, which can lead to psychosocial problems for the individual later in life.  However, the disease is not contagious because one can only contract the disease if one lives in an unsanitary environment and practices bad hygiene. Noma disease thrives in Africa because of the high poverty rates and poor hygiene conditions in many countries.”

One Noma clinic for 170 million Nigerians

After many months of futile search for medical help for her afflicted daughter, one of the mothers, Hassana, finally found light in a dark tunnel when some people she met directed her to Noma Children Hospital, Sokoto, where her daughter Laraba was operated on.

Commissioned during the administration of former president Olusegun Obasanjo, it is the only dedicated hospital in the country of 170 million people that caters for children battling with the disease.

The 100-bed hospital is a WHO reference centre for plastic and reconstructive surgery, and offers paediatric and surgical care for patients with Noma disease and Cleft Palate. From 1999 to date, over 5,000 patients have been operated on. Some of the surgeries were carried out by teams of plastic surgeons from Europe.

Although patients at the hospital are treated for free, however, due to the financial constraints of travelling far distances, not every child is as lucky as Laraba’s or Hassara’s.

According to 1998 estimates by WHO, 140,000 individuals contract Noma on a yearly basis mostly in Sub-Sahara Africa; of which 100,000 are children; while the survival rate is between 10 and 20 per cent.

This means that at least 110,000 people, mostly children, die every year from Noma disease.

While there are no accurate statistics for Nigeria, experts say the figure is one of the highest in sub-Saharan Africa which bears the brunt of the Noma scourge.

Adeniyi, who is also the chairman, Medical Advisory Committee, Noma Children Hospital, said between 150 and 200 patients visit the hospital on a weekly basis.

“This is a disease staring at us right in the face and we need to pay urgent attention to it. Apart from setting up more Noma hospitals, Nigerians need to be aware about the disease,” Orebanjo said.

Jabo said the cost of the treatment for each patient depends on the stage of presentation but it ranges from N100, 000 to N500,000.

“The hospital is like a collaborating centre with the presence of the Federal Government, while the state government takes care of salary and a non-governmental organisation helps with expertise and instruments,” Adeniyi added.

Preventive measures

Experts say Noma disease would remain a problem in communities with high malnutrition rates. Sub-Saharan African countries such as Chad, Ethiopia, Mali, Mauritania, Niger, Nigeria, Senegal and Sudan are said to have the highest incidence of individuals affected by Noma. Adeniyi said it was first discovered in Nigeria between 1969-1972.

However, Noma is not exclusively a tropical disease; it used to occur in The Netherlands as well. In Europe, the last cases were diagnosed in World War II in Nazi concentration camps.

According to the World Health Organisation, the most recently available annual incidence figure for Noma is 20 cases per 100,000 population. The disease occurs in 39 of the 46 countries of the African Region and about 90 per cent of children with Noma die without receiving any care.

Experts say the Federal Government should set up more specialist centres, particularly in the northern region, which has a high number of people suffering from the disease.

Orebanjo said, “Sadly, Noma is a disease that can be easily preventable if cost-effective treatment consisting in mouth rinses, antibiotics and nutritious food is administrated early on. Based on the national oral health policy, there should be a dental clinic in every local government, if this is in place, we won’t have such high cases of Noma disease in the country. Medical personnel should be trained on preventive measure and health care to tackle the disease.

“Reconstructive surgery performed on survivors can repair the disfigurement and functional impairment which is the certain consequence of Noma. Without reconstructive surgery, a child who survives is unlikely ever to be able to speak or eat normally again.”

Jabo added that Noma disease can be prevented by good oral hygiene, good balanced nutrition, and observed routine immunisation of childhood diseases.

Groundnut and bean cake seller Hassana Murtala, whose child is currently undergoing treatment at the Noma hospital said she now understands the importance of oral hygiene following her son’s ordeal.

“Once I learnt of Noma Children Hospital, I took her there. My daughter’s case got the doctors emotional, and they decided to carry out an operation on her to remove the lump which had turned to a huge growth.  But she will need to undergo a second operation; the doctors said they will use the extra skin dangling from her face to reconstruct her face,” Laraba’s mother said.

WHO noted that prevention, early detection, immediate care, informing and educating the public, epidemiological data collection and the creation of a referral centre for treating its aftereffects are strategies in tackling the disease.

Without treatment, Noma is fatal in 70-90 per cent of cases, and an extremely high number of deaths still occur, according to WHO.

Since 2001, the WHO and the Regional Office for Africa have been operating a regional programme to fight Noma with the primary goal of eradicating the disease in the African region, which remains the worst hit.

It entails inaugurating and incorporating prevention and treatment of Noma cases into national oral health programs. In recent years, WHO/AFRO has bolstered its action to develop and implement national programmes to tackle the disease.

Orebanjo said,“Prevention is the cheapest and most effective way of fighting Noma. Nobody had funded large-scale prevention efforts. We therefore need to encourage the large-scale national prevention programmes of the WHO and other humanitarian organisations.

“For this, it is vital to train the health workers and traditional healers who are present in villages recognise Noma at an early stage, because it then costs a few Naira notes for disinfectant and antibiotics to save the patient. The goal is to have one trained health worker in each village. This way, thousands of children will be able to escape being horribly disfigured.”

Similarly, a nutritionist at the Federal Medical Centre, Idi-Aba, Abeokuta, Ogun State, Okunola Oladimeji, advised parents to pay attention to their children’s diet.

He said, “Children between the ages of one and five should have a proper balanced diet. They need a wide variety of food for growth and health. Offer a range of different foods over the course of the week and your children are likely to get the nutrition they need. There is no need to cook special meals; use food the family enjoys.

“The best way to ensure that your child is eating a balanced diet is to offer a wide range of different food each day. By selecting the right amounts from of the food groups we have, you can meet your child’s nutritional needs.”