Al-Kistan, Syria – At first glance, everything looks normal in the village of “Al-Kistan” on the hillside of Al-Wastani mountains.
The view will charm you as you watch fields planted with wheat, vegetables and olive trees. The crisp air will surprise you, as will the perfectly-crafted homes housing the village’s 5,000 residents, all descendants of two main families.
But the catastrophic situation of one family says a lot about the plight of this village. In a modest house, Suleiman, 35, lives with his seven children. Four of them are blind; two boys and two girls: Nadia, 12, Diana 10, Muhammad 6 and Ahmad 3.
The four children were not born blind, says their father. Doctors disagree over the direct reason for blindness, with some blaming it on dysfunction of the retina and others on blood infection. But all doctors agree that the main reason is inter-marriage between blood relatives.
This is also asserted by Suleiman, who is married to his cousin. He reminisces: “My father’s aunt, who is also the aunt of my father-in-law, died 20 years ago after she suffered from the same problem.”
Official statistics in Syria, based on a study of 30,000 families across the country in 2009, show that consanguineous marriage – the union of two biologically-related people, including most controversially, first cousins, stands at 38% of all marriages in Syria.
But the ratio increases or decreases depending on the area, says Dr. Ali Rustum, the Director of Population Statistics at the Central Statistics Bureau. The governorate of Idlib has the highest ratio of inter-marriage among relatives, estimated by the survey at 50.2%. The ratio of mentally-challenged Syrians is about 10% of the total population of 23 million, according to estimates by the World Health Organization.
Baheej Duweidari, health director of Idlib, has long warned of the dangers of continued family inter-marriage in the governorate in general and in al-Kistan in particular.
What exacerbates the problem is that there is nothing in Syria that prevents family inter-marriage, unlike Cyprus, which prevents such marriages to protect public health. Judicial experts and sociologists say that it is difficult to take impose such a ban on personal freedom and the right to choose as guaranteed by the Syrian constitution.
Although Syrian authorities require a medical report prior to marriage indicating that the couple-to-be are free from diseases, the report does not prohibit them from getting married. It rather helps point out the potential for children to contract genetic diseases.
This measure is considered compulsory in eight Syrian governorates, at pre-marital test clinics. Plans are underway for setting up such clinics in remaining six governorates, including Idlib.
Not very far from Suleiman’s family, Mahmoud Yousef and his wife, a cousin, had their first son, Hassan, in 1969. It turned out later on that their first born was more of a curse that has afflicted the family over the forty years that followed. Hasan was the only son among five, who was born disabled. Before reaching the age of two, both his legs suffered from paralysis. He developed muscular dystrophy at a later stage, preventing him from walking. Today, Hasan is barely one meter tall and weighs less than 40 kilograms. He cannot move around without a wheelchair.
Twenty five years after this incident, the snowball effect has started.
The family witnessed a series of recurrences of Hassan’s case after his brother Mohammad married his cousin. Three of their six children were retarded, including Mohammad, the eldest. died three years later, without a clear reason.
Hassan’s two sisters, the first of whom married her cousin, and the other her aunt’s son, had a retarded child each. They both suffer from the same ailment as Hassan, their uncle.
Hassan’s father, Mahmoud Yousef, decided to re-marry after he was 60 to a non-relative. They had six healthy children, while children from his first marriage continue to suffer from retardation.
This large number of retarded children is accepted as part of belief in God’s will and desire. This was evident in the village of Al-Qabu, 25 km west of Homs, where around 9300 people live. Most residents refuse to declare the number of retarded children they have, emphasizing that “God decided, and did what He wanted.”
This reporter who was assisted by a female journalist who comes from the village and a physiotherapist treating a number of cases, counted about ninety cases of retardation in families formed through family inter-marriages.
In one of these families, more than fifty marriages have taken place between relatives, resulting in a similar number of disabilities, with diseases such as: Down Syndrome, Muscular Dystrophy, heart diseases, dumbness all types of birth defects.
This ill-fate is traced to the family’s great grandfather, who passed a judgment about a hundred years ago that none of his children or grand children will marry outside the family. This should be done to preserve the inheritance, family cohesion and a pure lineage. But he did not guarantee a family, or a lineage, that carries genetic diseases that modern medicine is unable to treat.
Inter-marriage within the family did not stop until 2008, after advice from doctors who followed retardation cases and gave parents the choice between stopping the inter-marriage or risk having more retarded children with no hope of being treated, as the village’s leader Adnan Al-Nadim explains.
“Virtually, every normal person carries one or more copies of a deficient gene within his or her cells, without it causing him any disease,” explains geneticist Dr. Lama Al-Jabban, who graduated from the University of Wales and is faculty member at the pediatric Section of the School of Medicine at the University of Damascus. She adds: “Genes exist in pairs. Each gene has two copies; one comes from the father and the other from the mother, and their presence together results in the genetic characteristics of the human being. There is a group of genetic diseases that are increased by family marriage, which we call Repressive Genetic Diseases. The presence of one copy does not result in the appearance of the disease, but if two parties carrying a defective copy of the same gene get married, the health problem occurs with both copies being transferred to the baby. Marriages among second cousins are more dangerous, whether from the father or mother’s side.
In the village of al-Al-Kistan 100 cases of retardation were recorded by this report at repeated tours and visits over one year. But some village residence who helped perform the field survey on retarded children, emphasize that the number may be much higher, because some residents prefer to conceal information about their retarded children “for social considerations”.
Al-Kistan families originally hail from two main families, or two grandfathers with no blood relationship (Hajj Wali and Mustafa). But Hundreds of families are their decendents, explains Mr. Abdel Malek Hammo, a school teacher in the village.
Among the 100 families who were equally divided, 50 who were related at various levels and 50 who were not, this reporter found out that 42 families from the first group had retarded children. The rate of retarded children increased among families where the parents were related at the second level (direct cousins) to 64.2% of the total sample. The rate went down to 30% in the third degree relationship families (where the grandparents are cousins). In cases of fourth degree relationships, the ratio did not exceed 5.8%.
According to observations by the survey team, effects ranged from severe or mild retardation, dumbness, blindness and cross-eyed individuals, to muscular atrophy in the lower and upper limbs, anemia, heart-muscle weakness and autism. In addition, they found other forms of rare and strange mutations (increase or decrease in the numbers of toes or fingers). The ratio of retarded children also increased in families whose members intermarry in more than one generation.
In the village of “Kanisat Nakhle” close to al-Kistan, the situation is clearly very different, although the two villages are similar in almost all aspects (economically, educationally and environmentally). They are different, however, in that family inter-marriages are much less.
Residents of Kanisat Nakhle hail from a group of families unlike Al-Kistan. Nine cases of retardation were observed in seven families out of 280 families who form this village. These six families hail from marriages among relatives. The cases were broken down into Down syndrome (2), birth defects (2), autism (2) and obesity resulting from over-active glands (3).
The 2009 State of the Children report on infant mortality in Syria found out that 9.55% of child deaths are the result of family relationship between the parents.
Official parties have not succeeded, so far, in convincing the public about the dangers of their choices in continuing inter-family marriages. Maybe they are not trying enough, says Mr. Hammo, a leading activist against marriages among blood relatives in al-Kisten.
A medical clinic was established in al-Kisten two years ago. But its medical staff is not sufficiently trained to deal with cases of retardation. Their role is restricted to providing normal medical services for all sick people, while other national associations looking after physically and mentally challenged Syrians restrict their activities to providing food rations and some wheelchairs.
The Syrian law does not address, in any of its articles, the issue of family inter-marriages, as is the case in all Arab countries, according to attorney Dr. Kinda Al-Shammat, the expert in Syrian family affairs. “Enacting a law that prevents family inter-marriage seems impossible in the tribal-dominated Arab society. Hence, tradition as well as social norms and values surpass these laws and hinder their application.”
Nevertheless, Al-Shammat suggests enacting legislation that gives women the right to express their opinion without family interference, preventing marriage among women women under 18 years of age and penalizing all those who participate in organizing such marriages including witnesses, the guardians and religious men. They also suggest activating the principle of compulsory education for women and men, including special sessions on the dangers of family inter-marriage.
Religious institutions can also spread such awareness given their importance in shaping the values of Arab citizens. The Christian churches in Syria, for example, avoid family intermarriage “due to the dangers it poses to lineage,” says father Elias Zahlawi. He adds: “A decision was taken by all Christian sects to prevent marriage between first cousins, but there are exceptions, especially in villages where traditions surpass any law.”
Islam also prefers marriage from genetically distant people, according to the Prophet’s saying: “Marry afar and you shall not diminish.”
Today, many related couples are convinced of the need to perform pre-marital tests, but most are not dissuaded from continuing their plans to tie the knot if tests proved that both are genetic carriers of hereditary diseases, as is the case of Ahmed.
Ahmad and his cousin underwent these tests, and had two children after getting married. Their kids inherited the deformed genes of their parents and were both born with heads that are bigger than the rest of their body. And they died before completing one year of age.
This report was completed with the support of Arab Reporters for Investigative Journalism (ARIJ)