Saudis ‘unaware of high birth defect rate’

Defects affect one in 24 newborns in Saudi Arabia

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People in the Kingdom are generally unaware of the high occurrence of birth defects in the country, according a leading clinical geneticist working with the Saudi Society of Medical Genetics.

Dr. Amal Hashem said as part of World Birth Defects Day on March 3, the society organized information booths at Riyadh’s Granada and Kingdom malls to raise awareness of the risks posed by birth defects.

She claimed that people were interested in their message but largely unaware of the high occurrence of deformities.

“At the beginning, women would ask ‘what is going on?’

“We would explain and show them that prevalence was higher and most of them would be surprised.”

The lack of awareness is startling, considering that Saudi Arabia has one of the world’s highest rates of birth defects.

According to the World Health Organization, birth defects affect one in 33 newborn infants globally.

In Saudi Arabia, Hashem says that figure is around one in 24.

The most recent study into birth defect prevalence in the Kingdom examined 3,000 infants over three years at Riyadh’s Prince Sultan Military Medical Hospital and found almost 1,200 babies were born with major birth defects.

An earlier report from 2006 by the US-based March of Dimes foundation puts the figure closer to one in 12 newborns affected by a birth defect, as defined by the WHO.

Both studies link Saudi Arabia’s high prevalence of consanguinity — or marriage to a close relative — with the high rate of deformities.

“We found that those with a consanguine marriage had a higher rate of birth defects than those who don’t have a consanguine husband,” said Hashem.

In Saudi Arabia, this rate is the world’s highest - over 55 percent of all marriages are consanguine, and over 30 percent are between first cousins.

The occurrence of congenital heart disease is particularly high for marriages between first cousins.

The extremely high rate of consanguinity is also leading to families with multiple genetic disorders.

“I’ve seen one family with four genetic diseases among their children, because both the parents were carriers for these genes,” says Hashem.

Attitudes are starting to change, but a lack of awareness of the risks and ways to avoid them is still high.

She said: “Awareness should start in high school

“We found that mothers, even if they’ve had a problem with their first child, still aren’t aware of the importance of folic acid and don’t take it.”

The B vitamin is essential to the healthy fetal development, with the recommended dose of at least one milligram a day for women of childbearing age.

Hashem says women in the Kingdom still do not get enough because they typically eat more rice than bread.

“Only 9-12 percent of mothers who should be taking folic acid are taking it.”

Premarital screening, another preventative method, is now mandatory in Saudi Arabia, but only checks for two genetic disorders.

Hashem is calling for selective premarital screening, where people intending to get married are screened for genetic conditions that have a history in their families.

“There can be 6,000 or 7,000 genetic disorders.

“We can’t scan for them all, but at least we can scan a particular family that is known for having a certain genetic disorder.”

She says that behavior is slowly changing with the introduction of premarital screening.

When screening was first launched, only 10 percent of couples whose tests revealed an issue would not get married.

That figure is now approaching 50 percent.

Still, Hashem says, increased awareness is needed.

She and other medical professionals in the Kingdom are calling for a national registry of birth defects.

Such a registry would let doctors see which defects are most common and allow the Ministry of Health to evaluate the success of primary prevention practices, as well as project and plan for facilities in the future.

Until a national registry is established, Hashem says that events like the World Birth Defects Day are vital for the health of newborns and families in the Kingdom.

At the booths in Granada and the Kingdom Center she and others handed out pamphlets from the U.S. Centers for Disease Control and Prevention that had been translated into Arabic.

Children, drawn by the booth’s colorful balloons, dragged their parents with them.

Fathers learned about the importance of folic acid, often leaving to get their wives so they could hear the benefits also.

Hashem says most were surprised by what they heard, but there was also disappointment.

“Some of them were angry; they asked why we hadn’t done this before.”

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