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Ruba and Saqib carry the genes of an incurable disease, which means that their children have four chances of dying in infancy. They are cousins. And they have already lost three children.
Now, Ruba wants to undergo in vitro fertilization to choose a healthy embryo. Saqib, in turn, places his hopes in Allah.
Ruba Bibi and Saqib Mehmood, her cousin, were married 11 years ago
She did not want to marry so young
Her plans were to finish her studies and go to university, but before reaching his goals, his parents arranged their marriage with Saqib in Pakistan.
Ruba was born and raised in Bradford, England.
She was in Pakistan. twice before marriage – once at the age of four and once at twelve
At age 17, she no longer remembered the man with whom she had betrayed and who was n & # 39; Had never been alone with him.
"I was very shy, I could not speak much and I had never been interested in boys," she recalls.
"I was very nervous because I did not really know him or anything like that, I panicked and begged my parents to put things off so I could finish my studies, but they could not. "
After three months in Pakistan, she became pregnant.
She returned to Bradford. two months later, shocked to have a baby so early. But also happy.
First attempt
Sabiq was in Pakistan. When her son, Hbadan, was born in 2007, she enthusiastically called to tell him that everything was fine, even though the baby apparently was sleeping more than usual and had difficulty feeding.
"I thought it was normal." said Ruba.
A few weeks later, she took him for tests and, while he was moving, the doctor noticed that his hip seemed rigid. "She said I was going to refer you to a specialist, but I thought it was not a bad thing.They pbaded exams and told me to go to the clinic. Infirmary to get the results. "
"When I went in and the doctor told me that I had a very bad news to give to me.He had a very rare illness.It was hard to hear and I was I just started crying. I went home and called my husband to Pakistan. He tried to calm me down. "Ruba did not know that she and her cousin were carriers of the recessive gene for the disease. cells I – also called mucolipidosis type II – a
Seven months later, Saqib received a visa to live in the UK and, for the first time, held the child in his arms.
"He said that Hbadan looked like a normal baby, I was neither sitting nor crawling, but my husband said that some children were like that, that they were growing more slowly," explains Ruba.
She could, however, notice a great difference between her son and other babies of the same age. Hbadan grew up slowly and often went to the hospital with chest infections. The size of her head had also increased
When her second child – Alishbah, a girl – was born in 2010, tests immediately confirmed that she was also suffering from the disease. She died at the age of three at the end of 2013, a little over a year after her older brother.
Before getting pregnant for the third time, Ruba consulted mufti Zubair Butt, the Muslim cleric at the Leeds Teaching Hospital, in England, to find out what his religion would say about exams that he would do during gestation to try to determine if the baby would have health problems, as well as the possibility of abortion if the I cell disease was confirmed.
He replied that
"If there is an illness that will kill the child in any way, or even if it does not kill him right away, but that's not enough." it is a debilitating disease, there is "
He however added that she should not do it simply because she's the green light for the procedure, because that would be something that she should live through to the end of her days.
She also advised him to listen to other members of the community, many of whom are probably opposed to abortion.
Infant Mortality
Ruba and her youngest son, Hbadan, were among the first participants in a long-term study of 14,000 families.
Doctors have identified more than 200 rare diseases in the region and are employing to improve prehospital testing in the city of Bradford, of which 46% are of Pakistani origin.
The study relied on the infant mortality rate in the city,
So when she became pregnant, she could find out what was going on in her mother's womb. in 2015, refused to pbad exams such as ultrasounds recommended by doctors.
"I wanted them to treat this as a normal pregnancy, I did not want them to put doubts in my head."
"I would tell my husband that he there was a chance that the baby was also sick, but he said that he was fine.I think I had a lot of doubts about it.I knew the probabilities were the same as those of both. other. "
The baby was a girl and called Inara. She was also born with an I-cell disease.
"I was very happy to have had a baby, but when we saw it, we already knew it," Ruba says. "I was sad and upset to be safe from pregnancy and wanting a healthy baby.I did not know how much pain she would go through, but my husband was happy.Inara is who died almost a year ago at the age of 2. Last December, she was infected in the chest, her condition quickly worsened, treatment in another city, but she did not
"The doctors spared no effort to keep her alive. I had hope, but I could see that she was suffering. She remained sedated until her death. I held her in my arms most of the time. Then I went to bed next to her. "
Ruba says that she does not know how they endured the trouble of losing three children and suffering six miscarriages, the last just a few weeks after Inara's death." I did not even know that I was pregnant at the time and that I hated after the burial, "she explains.
She says that it is the death of Inara who made her accept the connection that existed between her marriage with her cousin and the misfortune of her children. ] For a long time, she simply did not believe in the possibility, partly because she had seen other children with diseases and deficiencies at the clinic and that she was Clear that not all were designed by married cousins.
"My husband still does not believe," he says.
"I believe it now because it has happened three times, so there must be some substance in what they say, that must be true."
Cousin's Wedding
In 2013, researchers published in the Lancet newspaper the results of the study on cousin marriage showing that 63% of Pakistani mothers badyzed were married to cousins and were at double risk of having a baby. . with a conbad anomaly
The risk that a child born with heart or nervous system problems, for example, remains low but increases by 3% in the general population of Pakistan to 6% among married couples.
After the death of Inara, some of Ruba's and Saqib's parents, married to the same family, In the United Kingdom and Pakistan, they concluded that it would be unlikely that they have a healthy child – and argued that the marriage should result in a "happy separation".
"My husband says," If God wants to give me children, he can give me children, "said Ruba, generated by you, he gave me his children and can give me children in good health If it is written, it is written for you.I will not get married again and you can not remarry, we will try together. "
And although Ruba hesitated to marry in 2007 after 10 years with her husband, she does not want to separate.
"Our loved ones wanted us to separate for the children, so that I could have healthy children with another person and he too, but what if I have children in good health with someone and that they do not make me feel what it makes me feel? I can have children, but not a happy marriage.This may be not a good marriage and I do not want to bring children to the world alone without having the father among us.I have heard of people doing this, but it is not for us. "
But what options do they have then?
One possibility is that he undergoes in vitro fertilization. This would allow doctors to examine the embryos, reject them with Saqib is not excited about this idea, she says
"He only says that all that Allah will give us is what is written – we are destined to have a child like this, so we can have it in any circumstance, "she explains.
Ruba would like to try in vitro fertilization but the size of the waiting list is a problem 19659002] "I want this to happen quickly. If you wait for something for a long time, it is more tempting to try in a natural way, "she explains.
Her husband went to see her, but it is difficult for her to stay away from the bakery where he works and he speaks little English. "He does not know what they say," she says. "He's not enthusiastic, but he says it depends on me. "
Ruba says she can not predict what will happen, but she worries about the
" I thought the first time, when Hbadan was diagnosed, that I could not do that, but I did it three times, so I'm not sure, "she says.
Hbadan died on August 5, 2012, Alishbah on November 13, 2013 and Inara Eshal on December 6, 2017.
Cousins decided to reject marriages with relatives
The couple's experiences brought other members of the family, notably
"We do not # 39; plane s never thought about the risks – until the birth of my children, we had never thought that it was wrong to marry a family member, but because of what I was I lived with my family, I think "
" Ten years ago, I simply accepted what my parents had said, but our cousins now have the choice and say no to that. Our younger generation is taking this opportunity to make a choice and if she does not like it, she can talk about it. "
Ruba says she can stand firm because of religion.
" God only gives us the burden we can bear, "said Ruba.
" In this life, I am the most unlucky person, but in life to come, I will be the luckiest because they are innocent children. And these children will help you in the next life, because you will be with them. "
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