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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.
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.
She had plans to finish her studies and go to university, but before reaching her goals, her parents had arranged for her to. she is getting married in Saqib, 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 shy, I could not speak much and I had never been interested in boys or anything like that." I panicked and I begged my parents to postpone things so that I could finish my studies, but they could not. "
Two months later, he returned to Bradford, 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 got a visa to live in the UK and held the child in his arms for the first time.
"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.
She could, however, notice a great difference between her son and other babies of the same age.
When her second child – Alishbah, a girl – was born in 2010, tests immediately confirmed that she too had the disease. She died at the age of three at the end of 2013, a little over a year after her older brother.
"If there is a disease that will kill the child in any way, or even that it does not kill him quickly, but that is an illness.
He replied that the way would be acceptable, but he advised her to think, "Debilitating, there is enough reason to interrupt (pregnancy) before the soul enters the body, based on words of the prophet, "said the monk.
He added, however, that she should not do it simply because she had the green light for the procedure, as it 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.
Infant Mortality
Ruba and his youngest son, Hbadan, were among the first participants in a long-term study of 14,000 families. Bradford, 46% of them are of Pakistani origin.
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.
A recurrent drama
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So, when she became pregnant in 2015, she refused to submit to exams such as ultrasounds recommended by doctors.
"I wanted them to treat as a normal pregnancy, I would not abort, so I wanted to enjoy my pregnancy," she says.
"I would tell my husband that There was a chance that this baby would be so sick, but I knew I had a lot of questions about it, and I knew that the probabilities were the same as those of the other two. "
![] 104774237saqibinara976-3bad25f678adc039c67f3757cac965b5.jpg](https://media.metrolatam.com/2018/12/14/104774237saqibinara976-3bad25f678adc039c67f3757cac965b5-1200x0.jpg)
The baby was a little 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 her, we already knew it," Ruba said. . "I was sad and upset about having experienced pregnancy and we really wanted a healthy baby." I did not know what pain she would have, but my husband was happy. He said: "Just be thankful."
Inara is dead. almost a year ago, two years ago. 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 was holding her most of the time. "
Ruba says she does not know how they endured the loss of three children and six miscarriages, the last only a few weeks later the death of Inara. "I did not even know I was pregnant at the time and I hated burial," she explains. ” clbad=”img img-responsive image-large”/>
She says that it is the death of Inara who made her accept the link that existed between marriage and marriage. cousin and the misfortune of her children
For a long time, she simply did not believe this eventuality, partly because she saw other children suffering from illnesses and deficiencies at the clinic and was clear that they were not all designed by married cousins.
"My husband still does not believe," he says.
"I believe now because it happened three times, so there must be some truth in what they say."
Marriage between cousins
In 2013, researchers published in the scientific journal Results of the Lancet Study on the Marriage of a Cousin, showing that 63% of Pakistani mothers badyzed were married to cousins and ran a double risk of having a baby with a conbad abnormality.
The risk that a child will be born with heart problems or the nervous system, for example, remains
Bradford families still make arranged marriages and choose the newlyweds among their own members – a child on four in the study was the fruit of this kind of relationship.
After the death of Inara, family members of Ruba and Saqib, both in the United Kingdom and Pakistan, 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, he can give me children. children born to 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 remarry and you can not remarry we will try together. [[19659002] And although Ruba hesitated to get married in 2007, after 10 years with her husband, she did not want to separate.
"Our loved ones wanted us to separate for children, so that I could have healthy children with one another.But if I have children in good health with someone and that They do not make me feel like it makes me feel like I can have children but not a happy marriage.This may not be a good marriage and I do not want to bring the kids to the world alone, without having the father with us, but it is not for us. "
But what are the options then? ” clbad=”img img-responsive image-large”/>
One possibility is that she undergoes in vitro fertilization. This would allow doctors to examine the embryos, reject the carriers of the disease and choose a healthy model to implant in the belly of Ruba.
Saqib is not enthusiastic about this idea, she says.
"He only says that all that Allah gives us what is written – if we are supposed to have a child like this, we can do it under any circumstances," she says.
Ruba, on the other hand, would like to try in vitro fertilization – but
"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 says. My husband went to consult her, but he has trouble staying away from the bakery where he works and he does not speak much English.
"He stays there without knowing what he's saying," she says. "
Ruba says she can not predict what will happen, but she is worried about what a naturally conceived child might endure."
"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 says. "But it's not fair that the child suffers so much suffering."
Hbadan died on August 5, 2012, Alishbah on November 13, 2013 and Inara Eshal on December 6, 2017.
Case took cousins to refuse marriages with relatives
"We never thought at risk – until the birth of my children, we never thought "It was wrong to marry a family member, but because of what I experienced, my parents think twice before signing this type of union, "says Ruba.
" Ten years ago, I simply accepted what my parents had said, now our cousins have had a choice and they say no to that. "
Ruba says she can stand firm because of religion.
"Ruba only tells us that we can bear the burden we can bear.
" In this life, I am the most unlucky person that exists, but in the next life, 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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