"If I had known, I would not have married him. I would have even had an abortion. Why should my baby suffer?" 36-year-old Aida (not her real name) says.
Aida got married in 2004. A year later, her first child, a boy, died. The doctors could not figure out why he was sick, she says.
“My baby’s body was pale. When he was 20 days old, some doctors said he suffered from anemia. But we never received an accurate diagnosis,” she says.
Two years later, Aida gave birth to a baby girl, Irada (note her real name). This time, however, doctors figured out why Irada could not eat and why she was so pale: she was diagnosed with thalassemia, an inherited blood disorder.
Thalassemia is the most common inherited disorder in Azerbaijan, where Aida and her daughter live. People with thalassemia have less hemoglobin and fewer red blood cells than normal. While usually treatable, the disease can be quite serious. Out of the reported 280 million people worldwide who have thalassemia, an estimated 439,000 have a serious version of the disease.
On average over six percent of Azerbaijanis carry the thalassaemia trait, which is high compared to the country’s neighbors: one to two percent of Armenians and three percent of Georgians are diagnosed with the trait.
One way to prevent the spread of the disease is to pre-screen couples before they marry. If two thalassemia carriers marry, there is a 50 percent chance that their children will also be a carrier, 25 percent will have thalassemia and 25 percent will be born healthy. If two people who suffer from thalassemia marry, the children will inherit the disease as well.
In Azerbaijan, the government has taken steps since 2015 to increase screening before couples marry.
The tests are now mandatory, and look at other diseases, including HIV/AIDS. Azerbaijan’s policy is similar to the laws in several other former Soviet Union republics, including Uzbekistan, where premarital HIV testing is mandatory. Tajikistan made premarital screening mandatory in 2018, in order to prevent marriage between relatives.
Chairman of the Committee on Health at the Azerbaijani Parliament Ahliman Amiraslanov says mandatory screening is already making a difference.
“Since medical screening became mandatory, the number of children born with inherited blood disorders has declined by 45 percent. This is a huge figure,” he says.
Dr. Adil Geybulla agreed that premarital screening has significantly reduced the number of children born with thalassaemia.
"Before couples were not aware that they were thalassemia carriers and they gave birth to children with thalassemia. But after the medical examination, they were informed and they could prevent the birth of sick children,” he says.
Over a half a million people in the country have been screened since 2015, according to the Bahadur Eyvazov Scientific Research Institute of Hematology and Blood.
To date, the tests have found 20,000 were thalassemia carriers. The head of the institute, Zohra Alimirzayeva, said about a dozen couples have decided not to marry once they learned both were thalassemia carriers.
Jamila Hasanova, 33, from Neftchala and her then-fiancee learned they were both thalassemia carriers when they were screened for the disease. She says she was willing to break off the engagement but he wasn’t.
"Our relatives supported us; they said ‘it is your life and you should decide what to do.’ Now we are happy,” she says.
The couple got married in 2016 and had a baby boy in 2018. He is also a thalassemia carrier but does not have the disease itself.
Aida and her husband got married in Baku, the capital of Azerbaijan, in 2004, before the screening was available.
When the couple was tested, after the death of her first child, the test results were misinterpreted. "In Baku, doctors said only my husband was a thalassemia carrier and I was healthy. So that means our children could be a carrier or healthy,” she recalls.
But when her daughter Irada was born, it was immediately clear that she was not healthy. “My daughter could not eat. And, like my first baby, her body was also pale on the 20th day after her birth. The doctor said it was due to iron deficiency and the baby needed medical treatment. So Irada had a blood transfusion. But it didn’t help. The doctor required more tests,” Aida says.
Aida, her husband and her daughter took the additional tests, which proved that Aida was also a thalassemia carrier and her daughter had inherited the disease. Irada had a serious version of the disease, and required regular medical treatment.
Three years ago she got a bone marrow transplant in Germany. Following the surgery, Irada, 12, requires special treatment to help her body accept the transplant.
“Every three month we have to visit a hospital in Germany for checkups and medical tests, and then undergo the necessary treatments,” Aida says.
The treatments, however, are expensive – they cost between 5,000 and 10,000 euro – and Irada’s father does not help the family.
Aida, a geography teacher, earns about 500 manat (265 euro) a month, plus 106 euro from the government to help with Irada’s treatments.
The rest of the money for Irada’s medical treatment in Germany is covered by charity.
"We had a very difficult time with my husband. He did not care about us much,” Aida says, recalling that he always said “there is no need to treat sick child.”
So in 2013 she divorced him.
“My baby was important for me, so everything was on my shoulders. I had to find a donor for my daughter,” she says.