Although this is dated back to 2018, it's still an issue we need to look at.
Ruba Bibi while she was young had big plans. Marriage was never in her big plans. She wanted to pass her A-levels and find her way to the University. Just before she finished her GSCE exam, her parents arranged a marriage for her. A marriage to her cousin Saqib, a driver in Pakistan.
Ruba and Saqib both carry a gene for an incurable condition, which means their children have a one-in-four chance of dying in early childhood. They've already lost three. Ruba now wants IVF, to select a healthy embryo. Saqib is putting his trust in Allah. And some relatives want them to separate and remarry.
After three months in Pakistan she was pregnant. She returned to Bradford two months later, shocked to be having a baby so soon. But also happy.
When their son, Hassan, was born in 2007 she excitedly called Saqib to tell him that all was well, although the baby seemed to sleep a lot and had trouble feeding.
"I just thought it was normal," Ruba says.
A few weeks later she went for a check-up, and as the GP watched Hassan moving she noted that his hip seemed stiff.
She, however, could see a big difference between her son and other babies the same age. Hassan was growing slowly, and was in and out of hospital with chest infections. And as he got older his head increased in size.
When their next child, Alishbah, was born in 2010 tests confirmed immediately that she, too, had I-cell disease. She died at the age of three, towards the end of 2013 - just over a year after her elder brother.
Before getting pregnant a third time, Ruba consulted Mufti Zubair Butt, the Muslim chaplain at Leeds Teaching Hospital, to ask what her religion would make of screening during pregnancy - and termination if I-cell was confirmed.
He told her that it would be an acceptable course of action, but advised her to think very carefully.
"If you have this condition where the child is going to die in any case, or even if it doesn't die soon, it will have debilitating illness, that's sufficient reason to terminate before the soul enters the body, based on the sayings of the prophet," he said.
But he also said that she shouldn't do this just because she had a green light to do so, as it was something she would have to live with for the rest of her life.
And he advised her to consider the views of those in her community, many of whom were likely to oppose termination. "To overcome that, on a personal level, that's a great challenge as well," he said.
"I wanted them to treat it like a normal pregnancy. I didn't want them to put the doubt in my head. I wasn't going to have an abortion, so I wanted to enjoy the pregnancy," she says.
"I used to say my husband there could be a chance this baby is ill as well, but he said, 'It's fine.' I think I had a lot of doubt - I knew the odds were the same as for the other two."
But Inara too was born with I-cell disorder.
"I was really happy that I had a baby, but when we saw her we kind of knew," says Ruba. "I was sad and upset that we went through all the pregnancy and we really wanted a healthy baby. I didn't know how much pain she would go through - but my husband was happy. He said, 'Just be grateful.'"
Inara died almost exactly a year ago, at the age of two. She fell ill with a chest infection last December and her condition deteriorated quickly. She was taken from the Bradford Royal Infirmary to York.
"The doctors in York were trying to do 100% to keep her alive, I did have that hope but I could see she was in pain. She was sedated until she passed away. I had her in my arms for most of the time, then I lay down beside her. My husband realised she was taking her last breaths."
Ruba says she has no idea how they have all endured the pain of losing three children and of suffering six miscarriages, the last just weeks after Inara's death. "I didn't even know I was pregnant at that time and I miscarried after the funeral," she says.
She says it was Inara's death that made her accept a link between her children's misfortunes and cousin marriage.
For a long time she just did not believe it, in part because she saw other ill and disabled children at the hospice and it was clear that not all of them were conceived by married cousins. Some were from the white community.
"My husband still doesn't believe it," she says. "I believe it now because it's happened three times, so there must be something in what they're saying. It must be true."
"My husband says: 'If God is going to give me kids, then he can give me them from you. He's given me kids from you and he can give me healthy kids from you. If it's written, it's written for you. I'm not going to get married again and neither can you get married again, we are both going to try together.'"
And although Ruba was reluctant to marry in 2007, after 10 years of married life she doesn't want to part.
"Relatives wanted us to be happily separated for the kids, so that I can have healthy kids with someone else and so could he. But what if I do have healthy kids with someone, they might not make me feel like he makes me feel? I might have kids but not a happy marriage. It might not be successful marriage, and I don't want to bring kids up as a single parent. I have heard about people doing this but it's not for us."
But what options does this leave them?
One possibility is to have IVF. This would enable doctors to screen embryos, rejecting those with I-cell disease, and selecting a healthy embryo to implant in Ruba's womb.
Saqib is not enthusiastic about this, Ruba says.
"He just says that whatever Allah is going to give us is meant to be - if we're destined to have a child like this then we can have it in any circumstances," she says.
For her part, Ruba would like to try IVF - but the length of the waiting list is a drawback.
"I want it to happen quickly. If you wait for something for a long time then it's more tempting to try naturally," she says.
Her husband has been to appointments with her but it's hard for him to take time off from the bakery where he works and he doesn't speak much English.
As well as losing three children, Ruba has also suffered six miscarriages, the last just weeks after Inara's death. She hadn't realised she was pregnant at the time, but miscarried after the funeral, when Inara was buried alongside her brother and sister.
She is sustained by her religion.
"God only burdens a person with how much they can take. Sometimes I think people are so lucky, they don't have to try hard and they get a healthy child, but sometimes those children bring trouble when grow up and so those tests placed on them are different," Ruba says.
"In this life I'm the unluckiest person, but in the next life I will be the luckiest because they were innocent children. And those children help you in the next life, because you will be with them."
Source: BBC News
No comments:
Post a Comment