12 Noma: A neglected disease defacing Nigeria’s children
Noma is a neglected tropical disease affecting mostly Nigeria’s under-five children with the majority being from the country’s north-west region. It is caused by a number of factors including poor oral hygiene and malnutrition, which rapidly disintegrates
Six-year-old Yashe, was a happy and healthy girl until she suddenly took ill with a fever and then developed a wound on the right side of her face, three days later. In a twist of fate, Boko Haram insurgents, who had killed her father two months earlier in Borno, Nigeria’s north-east, drove her and the rest of her immediate family to Sokoto in the country’s north-west.
Yashe’s health landed them at the Noma Children’s Hospital Sokoto where the wound on her face was diagnosed as noma.
According to Medecins Sans Frontières (MSF) which runs the hospital alongside the Federal Ministry of Health (FMoH), Yashe’s family felt isolated because they couldn’t speak the local language but “mental health staff helped them integrate with the other patients.”
Six months after arriving at the facility in January 2017, the youngster received her first of surgeries to take care of the severity of her injury which had visibly disfigured her face and almost ravaged one half of it.
Dr. Adolphe Fotso, Medical Coordinator, MSF Nigeria, explained that, noma is an infectious disease, which starts as an inflammation of the gums, similar to a small infection of the gum. It very quickly affects the tissue and bone destroying the jaw, lips, cheeks, nose or eyes, depending on where the infection started.
Fosto also informed that while the disease is not contagious, children under five years are the most affected, especially those living in poverty and poor health - the two main factors behind the infection that leads to noma. Other contributory factors are malnutrition, bad oral hygiene, poor immunisation and childhood diseases such as measles and malaria.
He said, “Noma can be fatal within the first two weeks if the patient does not access treatment. Those who survive noma can be left with severe facial disfigurements and disability that make it hard to eat, speak, see or breathe.” The treatment mostly comprises surgeries and care afterwards until the wound heals.
Due to the inadequacy of case management programs in Nigeria to address noma, the FMoH held the National Noma Day on November 20, 2017. The forum brought together stakeholders to raise awareness on the disease. There were discussions on how to address noma in Nigeria, with an aim to develop a three-year draft National Action plan on noma control.
The International Noma Foundation (INF) prescribes food adapted to the needs of the child and a good oral hygiene, as the best preventive measure for noma.
According to INF, “Sensitizing populations to noma, setting up prevention programs that are simple and accessible to as many people as possible are the most effective ways to combat noma before it appears.”
The Foundation says with early detection and proper care, it could cure many children and prevent them from having “to suffer the disaster of the sequels. The management of first aid faces serious obstacles such as: poverty of public services, and social environments, nutritional recovery difficult to achieve, hospitalization of children complex.”
This year, the FMoH in collaboration with MSF and the World Health Organisation (WHO) organized a second edition on November 19 and 20 where stakeholders underscored the need to take a lead on noma at the national level.
The disease still remains an expensive one to treat and is heavily dependent on foreign aid.
The cost of treating one child with noma is around N500, 000 to N1million depending on the stage the child is being managed, with most of the patients being very poor and from interior hard-to-reach communities.
Since August 2015 till date, MSF has treated over 280 patients have received free treatment with over 500 surgeries performed.
Speaking on the challenges with performing surgery on children affected by noma, Dr. Bashir Jabo, a paediatric surgeon, and former chief medical director of the Noma Children’s Hospital from 2009 to 2016, said, majority of the children affected by the disease die in the acute stage.
He added that, “But for those who survive it and manage to make it to the hospital, there are a lot of complications and considerations. When it comes to the technical aspect of the surgery it is quite demanding.”
Specialists for the treatment include a maxillofacialist, physiotherapist, a paediatric anesthetist and sometimes a plastic surgeon among other personnel. Also, treatment is free to patients and foreign partners provide most of the consumables used.
“For a growing child, there are certain considerations that have to be made. It is not too common a disease, so experience on the part of surgeons is limited with managing such conditions. Surgeons must have had training and feel comfortable to carry out the surgery and the experience is limited to a handful,” Jabo said.
The hospital which was commissioned in 1999 is the only one in the world dedicated to catering to the disease. It treats patients from across Nigeria, especially from Sokoto, Zamfara and Kebbi states, as well as some from Rwanda, Burundi, Nairobi, Chad, Ghana and Niger.
After care is another concern for patients which Jabo describes as difficult.
He said, “Even after surgery, we have to follow up the patients to prevent some complications from arising, like re-infection which can take us back to square one. Many times we have to follow them back to their villages and if need be transport them back to the hospital. We also have to ensure that the nutritional value of the child improves, do physiotherapy and prevent everything that can mitigate against a complication.
“Due to the disfigurement, tissue loss, you have to provide a tissue cover, taking skin or some tissue from other parts of the body. So you need to be sure they do not get infected otherwise you are back to square one.”
Due to the injury, the child is usually unable to open the mouth, chew or swallow which may then lead to malnutrition. Where this happens a physiotherapist is engaged to ensure that such complication does not arise.
There is also the issue of social integration after a successful surgery. The children need to be reintegrated back into society so that they live normal lives and are productive. This brings about the long period of rehabilitation which involves encouraging them to go to school and mixing with other children. They are not outcasts and with good support can make it through life. This is an important part of the advocacy and is long-term.
Matshidiso Moeti, WHO Regional Director for Africa in a 2017 release said, “More than a disease, noma is a tragedy. As a problem confronting public health, WHO strongly believes it belongs to the political agenda of affected countries. But it goes further still, as an issue that transgresses the boundaries of human rights and equity.”
Religious and traditional leaders are part of out the advocacy process which is carried out through them as they encourage their communities to seek professional help against the disease and its treatment. These which also include patients, their caregivers and the larger communities, have led to an increase in referrals.
After her first surgery, Yashe was unable to continue with the others immediately because of complications with the flap covering her jaw.
She was discharged to go home to be able to grow some more before she returns for surgery in 2019.