When 29-year-old Alia looks at her two sick children, she wishes she could go back in time to refuse the arranged marriage that led to their illness. Both have muscular atrophy, a serious condition that retards proper growth.
Alia is one of hundreds of women in Idlib and its countryside whose children were born with deformities or genetic diseases as a result of consanguineous marriage.
“It is normal in our society for a girl to marry her cousin, especially since most parents are relatives themselves,” Alia said. Her own parents are first cousins, although their children were all born healthy.
Faten al-Souwayd, a 38-year-old social worker, denounced the phenomenon which she estimated as accounting for around half of all marriages in Idlib and its countryside.
“Most congenital malformations in children are caused by consanguineous marriage,” she said. “Recently, we have seen the phenomenon of marrying the brother’s widow, who is also a relative, which causes the transmission of genetic diseases to the offspring.”
The main reasons for such unions were, she continued, “Keeping inheritances within the family, the dominance of cousin relationships, the displacement of families, and here most families don’t trust strangers, unlike their relatives.”
Suheir al-Rahal, now 25, recalled how her cousin told her, “You are either mine or no one’s.”
Since Suhair hated this cousin, her parents had to send her to live with her brother who lived in Damascus.
There, a young man proposed to her and she married him, far away from the cousin who claimed he would kill any of her suitors.
Some women in Idlib said that they were married to their cousins against their will, while others said that they had no objections to the union. However, they failed to take into account the possible health implications.
Hanan al-Aahi, 38, from Maarrat al-Nu’man, has a happy marriage with her cousin, who she said she loved deeply. Two of their children are perfectly healthy, but the third and fourth suffer from thalassemia.
This is a serious genetic disease which needs lifelong therapy in the form of monthly blood transfusions and a daily drugs to remove excess iron from the body. Without regular treatment, suffers may develop chronic anaemia, bone malformations and delayed growth, ultimately leading to death.
Hanan has to taken her children to Kafr Nabl every 20 days for blood transfusions.
“I do not dare to conceive again because I’m afraid that I will have other sick children, especially as the doctor assured me that it could happen again,” she said sadly.
Nonetheless, Hanan said that she was grateful she had two healthy children.
“No doubt my husband would have married another woman so as to have healthy children, even if he didn’t want to give up on me. In the end, he deserves a chance to have children who will inherit his name,” she concluded.
Gynaecologist Asmaa Shaaban explained that thalassemia was a recessive genetic disease, where the father and mother were healthy but had a 25 per cent chance of passing the condition to their children.
The 35-year-old said that this was one of a number of diseases that were often the result of consanguineous marriage. Treatment was physically and emotionally painful for both the patient and the parents.
“Genetic diseases are very numerous and many are caused by a problem in an estimated number of 30,000 genes,” agreed Hala Khatib, 30, another gynaecologist and the director of the Women’s Medical Centre in Kafr Nabl.
She advised engaged people to undergo medical tests before marriage to avoid causing harm to any future children.
Some religious leaders also advise this course of action.
“Religion doesn’t ban consanguineous marriage but urges caution through taking the necessary tests,” explained Sheikh Ahmed Khatib, 45.
For some couples, however, it is too late for testing. All Shahira Taataa’s three children have cerebral atrophy. Aged between nine and 12 years, they are severely disabled and can’t move, speak or even sit.
The 31-year-old is married to her cousin, although both of them are perfectly healthy. Doctors have told them that their children’s condition is because of their consanguineous marriage.
Nonetheless, Shahira got pregnant again. She said she felt guilty but still nurtured the hope of having one healthy child to lighten up a life she described as “dark”.