Interview 38

Age at interview: 22

Brief Outline:

Mother of 1 child, married to her first cousin. 2nd pregnancy' 12-week scan normal. 20-week scan detected anomalies in the baby's brain. Specialist scan confirmed multiple abnormalities. Pregnancy ended at 20 weeks by induction. Post mortem indicated baby had proliferative vasculopathy with hydrocephaly (Fowler syndrome). Sent for genetic counselling, established she and her husband carriers of gene responsible for syndrome. She was pregnant at time of interview.

Background:

Pregnancy ended in 2004. No. of children at time of interview' 1. Age of other child' 2. Occupations' Mother - mother, Father - factory worker. Marital status' married. Ethnic background' British Asian.

Her consultant looked up Fowler syndrome on the internet for her but only found a paragraph about...

And basically he said, you know he tried to get more information from the books, from the internet, all you could get, my consultant, was one paragraph about the syndrome, and he was like he showed me the paragraph. He goes, "I was up all night on the internet, trying to find out about the Fowler syndrome", and he couldn't get anything, just that one paragraph. So they phoned up the genetics department at the hospital, and that's where they found out a bit more about it. They don't know much about it really, so they sent me for genetic counselling, and through the genetic counselling, that's where they are going to try and find out if there are any ways of diagnosing Fowler syndrome in the future - they can't do anything now. So it's just basically the Fowler syndrome, it's - well it says, from what information we had it's lethal in newborn babies, and I've been told none of the babies that have had Fowler syndrome have survived, no-one has survived. It's to do with the brain - lots of fluid in the brain, and having the stiff limbs.

She got upset when her aunts took photographs of her baby to send to their families.

Yeah that was okay, I didn't mind that at all. But what I had is - because then my Mum called all my family to come in and have a look at the baby, if they wanted to see him. And I did really mind because I didn't want anybody else to see him - like I didn't mind my sister and my mum and dad, like that, but when like my aunties and uncles came, you know, they're just all sitting there in the room and just, you know, comforting me and that and looking at the baby. And then my auntie starts crying and that got me more upset. 

And like some of my aunties, they started taking photos of the baby with their camera, that... on their phone, and that was upsetting, because I felt like, it's not that it shows anything, because they wanted to send it to their Mum so she can have a look, but I didn't like that at all, its just like there's nothing... you know. I don't know what the word is'

Describes her baby's Fowler syndrome which was the result of both her and her husband having the...

Okay, so I allowed a post mortem to be done, and once we got the results it diagnosed Fowler syndrome and it was basically, "What's that?" I'd never heard of anything like that. So what the consultant told me is the baby had abnormalities from head to toe. It was totally deformed. He had a lot of fluid in his brain. He had his - he had stiff limbs, he had a cyst on his heart. He had antroverted nostrils - because everybody's nostrils come down, but his nostrils were up. He had one of his legs was totally twisted, turned round, and when we saw his legs we could see the knee part at the back. It was just awful. 

And basically he said, you know he tried to get more information from the books, from the internet, all you could get, my consultant, was one paragraph about the syndrome, and he was like he showed me the paragraph. He goes, "I was up all night on the internet, trying to find out about the Fowler syndrome", and he couldn't get anything, just that one paragraph. So they phoned up the genetics department at the hospital and that's where them people, they found out a bit more about it. They don't know much about it really, so they sent me for genetic counselling, and through that, through the genetic counselling, that's where they are going to try and find out, to see if there are any ways of diagnosing the Fowler syndrome. You know in the future; they can't do anything now. So it's just basically the Fowler syndrome, it's - well it says, from what information we had it's lethal in newborn babies, and I've been told none of the babies that have had Fowler syndrome have survived. No one has survived. It's to do with the brain - lots of fluid in the brain, and having stiff limbs.

It happens because of genes. Something happens in the genes. Now this was because me and my husband are from the same family, like my dad and his mum - my dad and my husband's mum are brother and sister. 

Your husband's your first cousin?

Yeah, he's my cousin, that's it, that was the reason they gave me. At the beginning - because you are blood relatives, that's why this has happened. 

Another thing I want to point out is, on the first scan I had when they first saw the baby I remember my doctor saying to me, "It's just, you've been unlucky", that was when they didn't know it was Fowler syndrome. He goes this could happen like in one in - I can't remember what figure they gave me - a thousand, or a million people. You've just been unlucky, and you know to find out now it's Fowler syndrome, and I've got in every pregnancy a one in four chance of it happening again, that' s shocked me, because I thought it was just that one, and that's it, but it's one in every four pregnancies, a chance I have of it recurring. Because in the chromosomes they've got the genes - in one - there's a pair of genes in there and one of them is a carrier of the Fowler syndrome. 

So I'm a carrier of the Fowler syndrome, and my husband is, so it's come through my dad's and his mum's side. This has all come through the family, so when you have like one carrier - you have one gene that's normal and one that's a carrier, my husband's got one gene that's normal and he's a carrier, when it comes together - when both of the carriers, from both of the partners come together, that's when you have a baby like how we did, with Fowler syndrome. But you still can have normal babies, like I've had with my first one.

Describes how she felt about her baby's soul and why she was pleased that her husband took...

With the second pregnancy we don't have a prayer if you terminate the pregnancy, or the baby dies inside you, or is stillborn, because as Muslims, what we believe is the baby goes straight to heaven, so, it's like a little angel, so you don't need a prayer for them, because they are pure little angels. Whereas like, adults, people who breathe, children who breathe, that's a different case, where we will say a prayer for them. But with a termination, we didn't need to read anything or pray or anything, because that baby was pure, and went straight to heaven.

In our tradition - it's tradition this time - when it comes to burial women don't go to bury their baby. So it was my husband, my dad, all like the male relations, they went to bury the baby, and really I stayed at home. And I was glad, really, I didn't go to bury the baby, because I don't think I could have bear to see the little baby, you know, being put down in the ground. And I felt, because I went through birth, I gave birth to it, this was something my husband could do on his own. So I felt giving birth was my part - him burying the baby was his part. 

She can remember everything about her baby who died less than a year ago, and still thinks about...

Probably just a day, to recover from the delivery part of things, that was it. But I remember the baby every single day, you know, like when I go to bed, it just... every time, I just imagine me going through the labour. I think because I'm pregnant again, it's just bringing it all back. I can imagine me going through the labour, and just for the first time you know, seeing the baby, getting that, that shock, of seeing him not properly developed. And just finding out, you know when they did the scan, it weren't proper, it had like abnormalities and all that. It just runs through your head again and again. It just comes back to you, everything that happened, since you know going for that scan, till burying the baby - everything.