Fieldset
"Rage serves no place": Finding hope in a Noma hospital

British nurse Scarlett joins a specialist team in northwest Nigeria, helping young patients find new life after suffering from a devastating and disfiguring disease

Noma is a devastating disease which unjustly affects children who are often already suffering from malnutrition, malaria and other poverty-driven factors. 

I remember, the first morning I arrived at the hospital, I was eager to assist my new colleagues in caring for our patients. But, as I released the dressing from the first child’s face, I was hit with extreme anger and grief. 

The word “noma” comes from the Greek meaning “to devour”. This preventable infection had eaten away half of the young girl’s face. Her whole cheek was missing, her teeth and gums sore and infected and you could see up to her eye socket.  

I had to take a step back behind the mother and calm myself. The kind mental health nurse placed a hand on my shoulder whilst also holding the mother’s head while she was crying.  

The doctor informed me her bone was dead and must be removed. There is no option for her to be anaesthetised for such a procedure here. So, with a little topical pain relief, we begin to pull away the bone fragments.  

Blood and tears

Her mum held her head as the doctor used forceps to pull off the necrosed bone, which resulted in blood and many tears. Her tears, her mothers and mine. 

I had to take a step back behind the mother and calm myself. The kind mental health nurse placed a hand on my shoulder whilst also holding the mother’s head while she was crying.  

The inhumane disaster that I encountered that day is totally preventable and I could only feel rage at that moment for how we let this happen to our fellow human beings. 

However, rage serves no place in the clinic, so I had to take a big breath, pull myself together and present myself as a nurse who could learn to help in the wound-cleaning that is an essential part of noma treatment.  

Welcome to Sokoto

This was my first day at work as an MSF nurse. I’d been assigned to our project in the world's only dedicated noma hospital, in Sokoto. The MSF programme in Sokoto Noma Children's Hospital supports those who have been affected in a variety of ways.

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Sokoto Noma Hospital, in northwest Nigeria, is the only one in the country dedicated to fighting the devastating disease
Sokoto Noma Hospital, in northwest Nigeria, is the only one in the country dedicated to fighting the devastating disease

Sokoto is in the extreme northwest of Nigeria.  The city sits within a predominantly agricultural landscape where nomadic tribes travel the lands crossing paths with the city dwellers.  

Hausa is the most widely spoken language, and all of our colleagues spoke English too.  The dominant religion is Islam, and the local population observe religious behaviour and wear traditional dress. The call to prayer can be heard across the city throughout the day.  It is a comforting environment to be in when the people around you have such strong values and community-wide dignity.  

Nigeria is rich with natural and mineral resources, however, there are huge inequalities which can lead to devastating consequences, such as noma.  

As an experienced operating theatre nurse, I was there to support the local and international team during life-changing reconstructive facial surgery. Here, MSF’s humanitarian response aims to restore dignity to those who are affected, through quality care delivered by expert teams. 

A disfiguring and deadly disease

Noma is a disfiguring and deadly disease that kills thousands every year but receives little public attention.  It begins as a severe gum infection, leading to painful ulcers in and around the mouth.  

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Two-year-old Mohammed was brought to Sokoto hospital after wounds caused by noma made it too difficult for him to eat
Two-year-old Mohammed was brought to Sokoto hospital after wounds caused by noma made it too difficult for him to eat

The disease progresses into a necrotising infection which kills soft tissue. As it spreads, noma ravages the face, lips, and chin, leaving survivors with extensive scarring.  

The end result is lifelong disfigurement, disability, destitution, desperation and social isolation.

Sometimes the wound caused by noma heals, but in a way that locks the jaws together, eventually causing the bones to fuse and therefore preventing the patients from opening their mouths again.  This is called trismus. 

Noma survivors with trismus cannot speak or eat properly and, as they get older, are ostracised from their communities, making marriage and employment difficult, if not impossible. 

How can this be happening?

Noma is completely preventable. The last incidence of the disease in Europe was in prisoners of Nazi concentration camps during World War Two.

Ahead of their surgery, noma survivors are anticipating the first time they may smile, speak, uncover their face, have a nose or even eat properly for the first time. 

It is difficult to understand how, when we have international human rights protected specifically for children, this can still be happening. However, my colleagues informed me that the number of “fresh Noma” patients – new children brought to the hospital with the neglected disease – is increasing.  

Our patients often live in very remote areas and travel long distances to reach us. Some arrive severely malnourished and exhausted.  Their right to food, healthcare and sanitation is definitely not being met by the state or the international community.

However, at the Noma Children's Hospital in Sokoto the wonderful team endeavour to support their needs.

Inspiring and holistic care

The inspiring mental health team have a lot to do and are actively engaged in every step of the journey. 

This begins when a young child with noma arrives at the hospital. They need distraction and play whilst they undergo painful procedures to clean and treat their initial infections.  

At this time, the mental health team also gently support the patient’s caregivers (who maybe siblings, grandparents or even neighbours), giving them support to form positive relationships with and for the children who are often stigmatised by their communities and families. 
The team provides wonderful group sessions igniting discussions and helping noma survivors (noma has a very high fatality rate of up to 90%) to form communities within the hospital where often they have to stay for a long period of time. 

Hopes and fears

The mental health team also plays a dynamic role in supporting the patients before and after they have reconstructive surgery.  

This is an extremely anxious period, as they have often had to wait years before their faces can undergo the reconstruction.  Many have to leave behind family and farms for periods which jeopardise their livelihoods and security.  

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At Sokoto hospital, eight-year-old Umar plays with a balloon while waiting for surgery
At Sokoto hospital, eight-year-old Umar plays with a balloon while waiting for surgery

There is fear of the unknown and risks of surgery.  

However, alongside all these feelings, there is also excitement and anticipation too! 

Ahead of their surgery, noma survivors are anticipating the first time they may smile, speak, uncover their face, have a nose or even eat properly for the first time. 

Those who have been ostracised think about the day they will be released from their torment and able to participate in life again.

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