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Ruba now wants to undergo in vitro fertilization to select a healthy embryo. Saqib, in turn, places his hopes in Allah. And parents say that they separate, get married and have children with other people.
Ruba Bibi and Saqib Mehmood, her cousin, were married 11 years ago.
She did not want to get married so young.
He intended to finish his studies and go to university, but before reaching his goals, his parents had arranged their marriage with Saqib in Pakistan.
Ruba was born and raised in Bradford, England.
She was in Pakistan twice before the wedding – one at the age of four and the other at 12 years old.
At 17, she did not remember the man she had betrayed with and had never been alone with him. . He was 10 years older and worked as a driver.
"I was very nervous because I did not really know her," she recalls.
"I was very shy, I could not speak much and I had never been interested in boys." I panicked and begged my parents to put things off until later. to finish their studies, but they could not. "
After three months in Pakistan, she became pregnant.
He returned to Bradford two months later, shocked to have a baby so early. But also happy.
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," says Ruba.
A few weeks later, she took him for tests and, when he moved, the doctor found that his hip was rigid. "She said I was going to refer you (to a specialist), but I thought it was nothing serious.They did some exams and told me on the phone that I was not there. go to the infirmary to get the results, "says Ruba.
"When I walked in, the doctor told me that she had very bad news to give me." He had a very rare illness, it was hard to hear and I started crying, I went home and called my husband in Pakistan. He tried to calm me down and said that everyone had problems and we were going to live this together. "
Ruba did not know that she and her cousin were carriers of the recessive gene of I-cell disease – also called Mucolipidosis Type II – a rare hereditary condition that prevents the child from growing and developing.
Seven months later, Saqib received a visa to live in the UK and for the first time held the child on his lap.
"He said that Hbadan looked like a normal baby. He was neither sitting nor crawling, but my husband said that some children were like that, that they were growing more slowly, "says Ruba.
However, she could see a big difference between her sons and other babies of the same age Hbadan grew up slowly and often went to the hospital with chest infections.The size of his head had also increased.
When his second child – Alishbah, a girl – was born in 2010, tests immediately confirmed that she was also suffering from the disease.He died at the end of 2013 at the age of three years, a little over a year after her older brother
Ruba consulted Mufti Zubair Butt, the Muslim cleric at Leeds Teaching Hospital, England, to find out what his religion would say about the tests that she would do during her pregnancy to try to determine if the baby would have problems and the possibility of abortion if the I cell disease was confirmed.
He replied that the road would be acceptable, but he advised him to think.
"If there is still a disease that will kill the child, or even if it does not kill him right away, but it is a debilitating disease, there is enough of reasons to interrupt (pregnancy) before the soul enters into the on the basis of the words of the prophet, "said the religious.
He added, however, that she should not do it simply because she had the green light for the procedure, because that would be something she should live with all her life.
She also advised him to listen to other members of the community, many of whom are probably opposed to abortion. "Solving this personally is also a big challenge," she said.
Ruba and his youngest son, Hbadan, were among the first participants in a long-term study of 14,000 families in Bradford, 46% of whom were from Pakistan.
The study relied on the infant mortality rate in the city, twice as high as the national average.
Doctors have identified more than 200 rare diseases in the area and are working to improve prenatal tests that can help identify these diseases earlier, as well as therapy for couples.
Ruba decided that she did not want to interrupt the pregnancy of the third child.
So, when she became pregnant in 2015, she refused to undergo tests as recommended by the doctors in ultrasound.
"I wanted them to treat as a normal pregnancy, I did not want them to put doubts in my head, I was not going to have an abortion, so I wanted to take advantage of my pregnancy, "she says.
"I would like to tell my husband that there was a chance that the baby would be so sick, but he said that he was fine." I think I doubted a lot – I knew the odds were the same as the other two. "
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 were already aware, "said Ruba." I was sad and shaken to have experienced pregnancy and we really wanted a healthy baby. "I did not know not how bad it would have hurt, but my husband was happy, he said: "Just be grateful."
years of age. Last December, she was affected by an infection in her chest and her condition worsened rapidly. She was taken to another city for treatment, but she could not resist.
"The doctors were doing their best to keep her alive, I had hope, but I could see that she was suffering." She remained sedated until she I held her in her arms most of the time, my husband understood that she was sighing. "
Ruba says she does not know how they endured the loss of three children and of undergo six miscarriages, the last just a few weeks after the death of Inara. "I did not even know that I was pregnant at the time and I hated burial," he says.
She says that it is the death of Inara who made her accept the link 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 illnesses and health problems at the clinic and that It was clear that not all of them had been designed by married cousins.
"My husband still does not believe," he says.
"I now believe it happened three times, so there must be some truth in what they say. This must be true."
In 2013, researchers published in the scientific journal Lancet the results of a study on the marriage of cousins showing that 63% of the Pakistani mothers badyzed were married to cousins and ran a double risk to have a baby with a conbad abnormality.
The risk that a child born with heart or nervous system problems, for example, remains low, but increases by 3% in the Pakistani population to 6% among children married to parents.
Bradford families still make arranged marriages and choose spouses from among their own members – one in four children in the study is the result of this type of relationship.
After the death of Inara, family members of Ruba and Saqib, both in the UK and in Pakistan, concluded that it would be unlikely that they have a healthy child and argued that the marriage should result in a "happy separation". "This would allow them to remarry and have healthy children with someone else.
" We both said no, "says Ruba.
"My husband says:" If God wants to give me children, he can give me children born of you. "He gave me his children and can give me children in good health … get married again and you can not get married again, let's try together. "
And although Ruba was hesitant to get married 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 me too.But if I have children in good health with someone else. a and that they do not make me feel like he makes me I may have children, but not a happy marriage.This may not be a good marriage, and I do not do not want to bring the children to the world alone, without having the father with us.I have heard of people who do it, but it's not for people. "
But what options then remain ?
One possibility is that he undergoes in vitro fertilization. This would allow doctors to examine the embryos, reject the affected people and choose one in good health to implant in the uterus of Rubia.
Saqib is not enthusiastic about this idea, she says.
"He simply says that all that Allah will give us is what is written – if we are supposed to have such a child, then we can have it in all circumstances," she said.
Ruba, on the other hand, would like to try in vitro fertilization – but the size of the waiting list is an obstacle.
"I want this to happen quickly – if you wait for something for a long time, it is more tempting to try it in a natural way," she says.
Her husband consulted her, but it is difficult for her to stay at the bakery where he works and he does not speak much English.
"He stays there without knowing 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 is worried about what a naturally conceived child might experience.
"I thought the first time, when Hbadan was diagnosed, that I could not do it, but I did it three times, so I'm not sure," she said. "But it's not fair that the child suffers so much suffering."
Hbadan pbaded away on August 5, 2012, Alishbah on November 13, 2013 and Inara Eshal on December 6, 2017.
The case took cousins to reject weddings with relatives
The Experiments The couple took other family members, including Ruba's brother, to reject the cousin's marriage.
"We had never thought about the risks – until the birth of my children, we had never thought that it was wrong to marry a member of the family, but because of what I've lived with my parents, think twice before signing this type of union, "Ruba says.
"Ten years ago, I simply accepted what my parents said, but now our cousins have the choice and say no.Our younger generation is taking this opportunity to make a choice. do not like her, she can talk about it. "
Ruba says she can defend herself because of her religion.
"God only gives us the burden we can bear," says Ruba.
"In this life, I am the most unlucky person, but in the life to come, I will be the luckiest because they were innocent children and these children will help you in the next life because you will be with them. "
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