When Nadia noticed that her three-year-old son Ahmed’s head was growing at a rate higher than normal, her concern came at quite an early stage compared to most parents.
The 31-year-old mother took her son to the central hospital of Mansoura University.
“When they briefed me on the nature of my son’s illness, I told myself that I’m about to start a journey of suffering, more than just physical pain,” Nadia said.
Doctors told her that Ahmed had hydrocephalus: an accumulation of water within the brain. The water is scientifically known as cerebrospinal fluid (CSF), which is a clear fluid that surrounds the brain and spinal cord.
According to the National Institute of Neurological Disorders and Stroke (NINDS), the disease could lead to death. Hydrocephalus is most often treated by surgically inserting a shunt system.
Ehab El-Refaee, associate professor of neurosurgery at Al-Qasr Al-Aini, explains that the surgical operation to get rid of water from the brain remains a temporary solution.
This is how Nadia continued the painful journey. Ahmed had three surgeries to remove water from his brain over the course of three years.
Each year, 1 in every 500 babies are born with hydrocephalus. Another 6,000 children annually develop the disease during their first two years of life, states the National Hydrocephalus Foundation.
There is no official data available by the Ministry of Health. In fact, the head of the ministry’s Information and Statistics Department Ebtesam Mostafa says the ministry has “no clear statistics, only indications,” promising to provide data when available.
Ahmed Zohdi, the Egyptian supervisor of the Cairo Greifswald Collaboration and professor of neurosurgery at Al-Qasr Al-Aini, estimates that the rate of hydrocephalus cases in newborns in Egypt is 1 in 5,000.
El-Refaee identifies symptoms of hydrocephalus in infancy as the abnormal increase in the size of the head, with sunset eye sign, vomiting, and delayed milestones, which means a child’s development is slower than average.
“Hydrocephalus can occur in different age groups according to the causes,” says El-Refaee.
According to NINDS, adults may experience different symptoms including headaches followed by nausea, vomiting, blurred or double vision, sunset eyes, balance problems, coordination impairment, gait disturbance, urinary incontinence, slowing or loss of developmental progress, lethargy, drowsiness, irritability, or other changes in personality or cognition, including memory loss.
The causes of hydrocephalus are still not well understood. They could be the result of inherited genetic abnormalities or developmental disorders.
“We have high rates because of pollution and inflammations during pregnancy and in babies’ neonatal intensive care unit (NICU),” says Zohdi.
The relation between hydrocephalus and cousin marriage is not obvious according to El-Refaee, who said that “positive consanguinity is not directly related to hydrocephalus; however, other diseases that can cause hydrocephalus are related to consanguinity.”
The relation between smoking and hydrocephalus is still under research, including different types of smoking, he added.
Both Zohdi and El-Refaee expect a relationship between hydrocephalus and spina bifida (a condition in newborn when the spinal cord does not form properly), because congenital hydrocephalus is often accompanied by Chiari II Syndrome, a malformation that includes both spina bifida and hydrocephalus.
Diagnosing and treatment
Hydrocephalus can start as early as in the first few weeks of pregnancy. It is first diagnosed clinically then by imaging of the head.
El-Refaee explains that the main treatment in children is through VP shunt.
A shunt is a flexible but sturdy plastic tube, consists of the shunt, a catheter, and a valve.
According to NINDS, the shunt system diverts the flow of CSF (cerebrospinal fluid) from the CNS (Central Nervous System) to another area of the body where it can be absorbed as part of the normal circulatory process.
In 2015, El-Refaee started working as the coordinator of an Egyptian-German project in the field of pediatric hydrocephalus aiming to detect the success rate of different treatment options. The Hydrocephalus Research Group was established.
He explains that a memorandum of understanding was signed between the faculties of medicine in Cairo and Greifswald Universities aimed at collaborative work in the fields of research, training, and doctors exchange since 2012.
The Hydrocephalus Research Group is establishing now a wider project of national database registry to start collecting all cases of the disease in Egypt with the support of Zohdi; Henry Schroeder, a German supervisor of the collaboration; and Nasser El Ghandour, the president of the Egyptian Society of Neurological Surgery.
“The support of several institutes, foundations, and societies in Egypt is crucial to establish this national registry programme,” El-Refaee said. He expressed hoping to launch the registry on 18 August 2018.
Due to his work as a coordinator of the Egyptian-German Hydrocephalus Research Group, El-Refaee has a comprehensive vision on the situation of the disease in Egypt.
“We collected more than 1,000 cases in two years, while statistical results of death cases are still under revision,” he said.
El-Refaee argues that, from experience, it is beneficial to start a national registry to be able to count cases because there are “too many” in Egypt, especially amid a lack of statistics.
This article is part of the science journalism project “Schreiben über Wissenschaft” of the Goethe-Institut and the German Academic Exchange Service (DAAD), supported by the German Federal Foreign Office. More information can be found at https://www.goethe.de/egypt.