A fig leaf the size of a business card
Her book accompanies me on my way to Niger where the Paris Teo2004 team organizes a neurosurgical mission at the National Hospital in Niamey. Earlier this year I was with the Teo Aquitaine team from Bordeaux in Cameroon.
Niger does not have direct access to the sea. According to the UN index of human development (2013), Niger is the least developed country in the world.
The more than 20 million inhabitants depend on the Niger river, the rest is desert. Despite the serious food shortages, the country hosts a large number of displaced people who are fleeing the violence of Boko Haram. The red-brown, arid plain is littered with houses that draw the landscape like loaves of the same clay.
This week, after four years of renovation, the colonial museum in Tervuren reopens. This is accompanied by a heated discussion about decolonialization. How do you show the mistakes of the past with respect for the people who suffered from it?
Macron returns stolen works of art to Benin and speaks with representatives of the yellow vests. They are also becoming active in Belgium where the government stumbles over the UN migration pact.
Together with Dambisa Moyo I am on my way to Niger, where children with spina bifida and hydrocephalus are also born. To keep the care and treatment affordable for our children, Child-Help is committed to translating current medical knowledge with the help of local and Western experts into the possibilities that are available in the country. As an alternative to expensive CT scans, Child-Help purchased an ultrasound machine for the Bugando hospital in Mwanza (Tanzania). Affordable care saves children's lives. Certainly, in countries like Niger.
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| Teo2004 brings bags, mainly filled with medical equipment |
When I arrive, the Paris team has already left for the hospital and therefore I planned an appointment with 'Aide et Action'. They focus on the integration of disadvantaged children into education. With over 40 inclusive schools, they reach 1200 children across the country. But not one child with spina bifida is included. They remain hidden, especially because of the incontinence. “When they are dry and clean they can come to us for education, but incontinence is something medical that does not fall within our remit” they say. "Not even when it comes to integration into education?" I try. “No, that is the role of health centers and they do not have this know-how” Aide et Action responds. And so also here children with spina bifida remain excluded from education. Community-based rehabilitation (CBR) sees ‘Aide et Action’ as the local pooling of forces, they are part of this. However, also CBR doesn’t have this specific expertise for incontinence available. They propose to contact Humanity and Inclusion (HI), formerly known as Handicap International, but when it comes to incontinence, HI calls Child-Help for its expertise. By changing their name, they have extended 'disability' to all minority groups in humanitarian need. Our children, who are already excluded from everywhere and everything will not gain anything from this name change. The large cash flows go towards humanitarian aid such as famine, refugee camps and natural disasters. Our Tsunami of nearly one million new cases per year remains under the radar.
Cameras cannot get a million hidden families into the picture. Our children do not block the crossroads with yellow vests on their backs.
So, health centers it is. This is in line with recent questions we received from Tanzania and Ethiopia to support health centers with our expertise on spina bifida and hydrocephaly. Health centers could have a CBR element which deals with the medical problems of children with spina bifida. Primary care must be available closer to where people live. We also lose children due to the long travelling distances to the places where care is available.
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| Dr. Olivier Delalande |
The Parisian Teo2004 group consists of Olivier, a young retired neurosurgeon, Martine a neuropediatrician, an Electro Encephalography (EEG) technician, a nurse, an anesthetist and a children's animator. It is their 14th mission here. They have developed a long-term relationship with the hospital. A relationship on which I hope to be able to build.
Martine has developed a service for epilepsy, donated an EEG device and trained a technician. Epilepsy is a big problem in Africa. 5 years ago, Teo2004 funded a playroom for the hospitalized children. Also this time they bring along 7 large bags, mainly filled with medical equipment but also toys for the children.
The neurosurgeon gives lectures and attends the meetings with patients. He reacts strongly when he hears that a child with a stabilized hydrocephalus will get a shunt. ETV, with a rigid scope, also donated by Paris, is only performed under strict conditions and only in 30% of cases. In this case spina bifida is a contra indication.
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| Professor Samula |
Professor Samula, the head surgeon of the hospital, is our host. He informs us that the incidence of spina bifida in Niger is also very high, but he does not have exact figures. He receives one to two new children with spina bifida every day. There are now 6 neurosurgeons but only one operating room. On Saturdays and Sundays, only emergencies will be treated. And we have to be honest, he adds, spina bifida and hydrocephalus are seldom seen as emergencies. As a result, there is a waiting list of more than 200 children, one third of them die while on the waiting list. Also the need for anesthesia increases the waiting list, a child requires more time to prepare for surgery than an adult and there is no money to be made. In Niger the care up to 5 years of age is free, so are the CT scans. Samula speaks frankly and does not hide anything. He studied in France but fights for his country and his neurosurgical department. He tries everything to avoid that the surgeons he trains would leave the country. When
I talk to him about the costs for the patients themselves, he argues that we should try and get the country out of poverty. The international food aid demotivates the farmers, there is water in the ground, why not invest in water supply. The old irrigation systems need to be repaired. It only rains here 2 months a year! Although care is free, parents have to pay for transport, medication, shunts and some other surgical equipment. He seems to agree with Dambisa Moyo, but he is happy with my proposal to donate the shunts for these poor people. He has put away his big dream of a neurosurgical center. There is no money available for that now. Extending and renovating the existing facilities is more realistic.
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| Elilepsy programme initiated and funded by Teo2004 |
Thirty parents are waiting for me on the floor of the play room. The room is decorated with garlands. Children are playing.
Chérifa, a beautiful six-year-old veiled girl with spina bifida, crawls around with a doll on her back in the same way that she is still carried around by her mum. She eagerly poses for a
photo with her older sister. Chérifa means Nobel, honest. So are her eyes and her smile. To my surprise Samula who is very busy keeps listening. Most parents only speak a local language which is different from the next language. The talk will be facilitated by two or three translators and Samula is helping when necessary.
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| Chérifa on a selfie with sis and Pierre |
There are no fathers present. Many of these mothers have been expelled from their community because people believe that these children are bewitched. They believe that the devil penetrated the pregnant woman because she insufficiently covered her body in public. Thus, the unborn child became possessed. The mothers get the blame and are rejected by a lot of the fathers.
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| Chérifa |
I sit down with them on the floor and tell that I am a father of a child with spina bifida too. I tell them that this birth defect occurs all over the world. That both I and they are innocent. That it is a global health problem and that they do not stand alone. There is IF and a whole community with children like ours. I tell them how some of our children do well, study, marry and have children themselves. About Margo who succeeded me as chairman of IF, who is a pediatrician in a wheelchair. I encourage them to invest in the talents of their children when the legs are failing.
There are questions about high costs, incorrect treatments and waiting lists. The mother of Chérifa undresses her child and with desperation in her eyes shows the bedsores on Chérifa’s backside. A raw and honest truth, but it is not very noble. A festering wound, as big as the fist of a child. Another mother does the same with her six-year-old son: also two big festering wounds.
I explain to them that bedsores should be prevented as much as possible. That these children do not feel it but that natural honey disinfects the wounds and heals them. In this warm climate where the temperature rises to 40 ° in the shade, these wounds are also caused because the child is sitting in its own urine and stool. Child-Help has developed affordable solutions for incontinence. The incontinence for bowel movements can easily be learned and does not cost a lot of money. Samula asks me to explain to them exactly how this works. I explain about the bowel wash-out that should be done every second day and the frequent need for catheterization of the bladder. There are solutions and Child-Help wants to bring them to Niger.
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| parensts, children and Pierre Mertens in play room |
Will my child be able to walk? What about education? Does such a shunt always remain in place, do you have to catheterize for life? I listen and answer honestly to all questions. A mother testifies how well her eight-year-old child is doing now. Hope arises and that is a good thing, because hope is needed to believe in the future of their children. However there is also a great expectation towards me and towards Child-Help. They feel abandoned by all NGO’s and now there is a white man who has experienced the same problems and brings hope and solutions. Their stories are universal, their problems unsolved, their hunger for information and hope for change legitimate.
Because of the language differences, mothers have limited contact with each other. For them it is difficult to form a group.
For Child-Help the commitment of these parents is important. The poorest country in the world, plagued by violence and extreme drought, has a Babylonian language problem and is cut off from the world by its misery. Who is still going to Niger?
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| Play room built and funded by Teo2004 |
A mother asks “and what now?”. "You have been here so often. You leave and nothing changes here. I come from very far, what do say to my husband? "
I'm stammering that I am in Niger for the first time. I give her my business card as a means to keep in touch. Her question is really legitimate. In the immediate future nothing will change here. My name card feels like a fig leaf and does not answer her question of “what now”. These mothers stay behind with their children. I am confused and while I think about what to say, there is suddenly chaos because everyone wants my business card. It looks like the food distribution in a refugee camp. My cards stand for something, as if it were just to take something real from me home. A sign of hope, a desire for change.
The mothers are called away for a clinical examination, but they do not want to leave. Their program of the day has to go on and I am leaving the play room somewhat confused.
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| Parents sleep outside when kids are waiting for surgery |
Samula who stayed till the end is impressed. We have to do something now.
Rather today than tomorrow. We do not talk about incontinence because we do not have a solution, but that is their biggest problem. I suggest that he looks for a nurse who is interested in setting up a continence project here. Child-Help can provide her with material and find a place in Africa where she can be trained. But where can she work? "In my department," Samula replies.
At breakfast I join the French team and ask how they see our future cooperation? Olivier and Martine are pleased with the interest of Child-Help to take over part of the follow-up in the hospital. They see us as the experts and really hope to work together on follow-up. Martine returns the question: “Child-Help must have experiences, how do you work in other countries?”. Child-Help basically deals with a local request from a potential partner. We did not have one in Niger, but now we do. Samula heard the desperate cry of help from the parents. We also can benefit from the fruitful relationship that Teo2004 has built with the hospital over the years.
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| Professor Samula and dD. Delalande teach staff and students |
In the hospital I ask to bring a visit to the new general manager of the hospital. It is important to have the management on our side. Samula tells him the whole story of Teo2004. What has been built up with them over the years, EEG, endoscopy, the playroom, international exchange of students and how Child-Help was added to this. He has heard the cry for help from the parents and that the follow-up of these children, as proposed by Child-Help, can be grafted onto Teo's work. It is a logical next step.
Although there is a strike from nurses and other staff, Samula has managed to arrange for Teo's plans to continue. I visit the physiotherapy ward where only the head of the department keeps watch. The others are also on strike. His department sees many children with spina bifida and he thinks that a continence management project can be developed here. The location already looks suitable for this. Two days a week are reserved for children.
With Martine visit the ward of children who have been operated on or are waiting for further treatment. I regret that no pediatrician from the hospital participates in this visit. The service would be enriched with a local pediatrician such as Martine. But the pediatricians focus mainly on malnutrition and infections, they only come to neurosurgery when they are asked.
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| The white balloons are not chosen |
I am charmed by how the French nurse speaks with love to and about the children. Most of the children are doing well. I see that appropriate medicine is applied here.
Meanwhile, the French animator decorates the beds with (unfortunately no latex-free) balloons and the children get toys. The mothers choose the color of the balloons. All the white ones are left over. And rightly so, there is already enough white in this ward.
I speak to the only father present on the ward. He is from Tahoua, a city 500 km away from Niamey. He is a teacher and regional representative of his area. His daughter received a shunt but is waiting for a second operation. He paid 115 euros for this shunt and has been in hospital for 37 days already, he sighs. The waiting list is a heavy weight. Someone like him could inspire an association of parents. I tell him that I am also a father and I have learned a lot from other parents in my country. That would also be useful here. He argues for a more regional approach. The distance is murderous. I plead to get together locally with three or four other families. Even if it is a small group at the start to stand up for the needs and rights of their children in Niger. We make a selfie and exchange addresses.
Martine starts neurological consultations and Olivier an operation. In the afternoon lectures are planned. After lunch I say goodbye to the French group in the cramped office of Samula. It is a formidable challenge to be able to make a difference for these parents and at the same time a luxury situation to be able to build on what Teo2004 has already realized here.
There is so much to do, so much suffering, so much injustice that remains unseen.
Meanwhile I read the whole book by Dambisa Moyo, it’s excellent but far too oriented on economics for me. She is right when she says that the decade-long aid programs for Niger have not taken the population out of poverty and maybe even were part of the cause that nothing has changed their situation. She argues that countries invest in infrastructure that attracts and stimulates the economy. She underlines that never ending aid has a counterproductive effect and paralyzes the local population.
Child-Help and Teo2004 must be aware of this. Projects may not depend on us. We want to make ourselves superfluous in the long term, says Olivier.
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| Two fathers, a start? |
Dambisa Moyo does not give any solutions for the injustice that these mothers experience. Only when a country grows economically, will the health care improve.
The children in Niger cannot wait for decades for the economic recovery of Niger. They are incontinent under a burning sun of 40 ° in the shade.
But Dambisa Moyo is right, Niger is their country, their elected representatives, their health care and especially their children.
I wonder if the renovated colonial museum also pays attention to 'dead end aid' of the post-colonial era.
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