(IRIN) – The bandage covering Olida Soanirina’s eye does not disguise the ravages of hydrocephalus as the three-month-old recovers from an operation at the Joseph Ravoahangy Andrianavalona Hospital (HJRA) in the capital Antananarivo.
A few days after she was born, her head swelled and her constant tears were soon replaced by blood seeping from her eyes, which prompted her farmer parents from the port city of Toamasina, 215km east of Antananarivo, to seek medical help.
“I’ve never seen or heard of this type of thing. I thought her eye was going to grow and grow until it exploded”, the 30-year-old mother of two, Nordina, told IRIN. “We don’t know what we would have done if no one had helped us and brought us here. We don’t have money. What we grow is what we eat and that’s it.”
The doctor diagnosed the condition as hydrocephalus, otherwise known as “water on the brain” and sent a photo to neurosurgeon and paediatrician Nazaraly Nour’Aly in Antananarivo.
Hydrocephalus is caused by an accumulation of cerebrospinal fluid in the brain’s ventricles, with those who suffer from it producing up to seven spoonfuls an hour while the average person produces one. Left untreated, the condition causes the head to swell as pressure increases, leading to disability and a painful death.
Treatment in the developing world is difficult because of the high cost of neurosurgery operations which put a valve or “shunt” under the skin to drain excess fluid from the brain to the stomach.
The Brussels-based International Federation for Spina Bifida and Hydrocephalus (IFSBH) has assisted Nour’Aly to reduce the cost of each valve from US$333 to $50, by including his order of 150-180 a year for Madagascar in an Africa-wide batch sourced from India.
“If no-one treats them – if they don’t know where they need to go, especially people who live in the bush or rural areas – then from that moment they start to die, or they become completely handicapped and they die in atrocious suffering within a year maximum,” Nour’ Aly told IRIN.
In the same hospital is 13-month-old Lina Razakamaniny, who is vomiting some of the fluid being directed to her stomach after surgery; her head still disproportionately large.
Her mother Nadia, also a farmer from Toamasina, contacted Nour’Aly when Lina was six months old and could no longer move. Sight problems are also associated with hydrocephalus as the immense pressure pushes the eyeballs down, but as Lina moves her eyes the flecks of brown coming from the whites of her eyes means she will soon be able to see again.
These children can grow up normally, go to school and play non-violent sportsPrior to 2004, there was no treatment available for those suffering from hydrocephalus, and for those that could afford it medical care was sought from the Indian Ocean islands of La Réunion and Mauritius.
Nour’Aly established the NGO Global Medical Centre in 2004 after assisting UN agencies in a country-wide three-year polio vaccination programme in the late 1980s that saw him visit thousands of medical centres and encounter numerous cases of hydrocephalus.
“It’s too expensive and we don’t have the means”, was the response he got from parents and doctors as to why children suffering from hydrocephalus were left untreated.
Nour’Aly said “their children were condemned to die” at home in awful conditions, with increasing pressure on the spinal chord causing agonizing pain from “the least movement”.
Madagascar’s Health Ministry has no statistics on hydrocephalus.
Nour’Aly’s NGO negotiated with the government for 24 beds in an Antananarivo public hospital and access to an operating table and he would then pay about US$700 per child for treatment expenses.
Hydrocephalus cannot be cured, but the pressure on the brain can be relieved by medical procedures and through it “these children can grow up normally, go to school and play non-violent sports”, with a life expectancy of up to 30 years, Nour’Aly said.
Since 2004, Global Medical Centre has treated 1,001 children up to the age of six in Antananarivo, and 34 other children in Madagascar’s second largest city Fianarantsoa since 2008. Forty-one children have died from cancerous tumours the operation could not remove.
Although the causes of hydrocephalus are not completely understood, medical experts estimate that it affects about one in every 500 children, and is the most common brain operation among children in the USA.
Nour’Aly believes about 60 percent of cases he has treated were from meningitis infections; 20 percent were congenital; and 20 percent were from the effects of malnutrition.
IFSBH says scientific evidence dating back to 1986 showed folic acid deficiency during pregnancy was linked to the condition and has lobbied for foods to be fortified with foliates, especially in developing countries.
According to the UN Children’s Fund (UNICEF), more than 50 percent of children in Madagascar are stunted from chronic malnutrition, and the country has one of the world’s highest malnutrition rates. The staple food ( rice) is supplemented, if at all, with a few bits of vegetable.
Nour’Aly distributes alfalfa, a dietary supplement high in vitamins A and D and packed with nutrients, through Madagascar’s Office of National Nutrition (ONN).
However, he told IRIN the government was profiting from the alfalfa, which was sourced for free from donors in France, but then taxed to the tune of US$1,400 a ton.
“Women must be vaccinated during pregnancy and babies, especially for meningitis” and dietary supplements made more available, Nour’Aly said.
Sanctions were imposed on Madagascar after the 2009 illegal transfer of power saw Andry Rajoelina, with the support of the military, depose President Marc Ravalomanana.
By some estimates 80 percent of those living in rural areas earn US$1 a day or less, while health spending has decreased from US$8 a head to US$2 since 2009.
Nour’Aly is scheduled to visit the USA in 2012 to raise awareness and funding for the treatment of hydrocephalus in Madagascar.
“I’m 82 now, and with the work that I do, I have to be conscious of who will carry it on, so I’m going to try and set up a foundation to take over and fund Global Medical Centre.”