Age at Interview:
Children: 1 (age 6), Occupation: Mother - full-time mother, Father - management consultant, Marital status: Married.
Brief outline:1997 - nuchal scan and CVS confirmed Down's syndrome - decided to end the pregnancy. Has since had a healthy baby and is now pregnant again. Had CVS again.
I had met children with Down's syndrome through my work, in that I was a public sector auditor, so it was my responsibility to go round certain authorities and looking at how they spent public money. And one of the things that we looked at was how they spent money on special schools versus supporting children with special needs in ordinary state schools.
So I had met children with Down's syndrome and I explained that to her, and yes, I was frightened by her response. She said “Did you know that Down's syndrome is a very long spectrum, and if you've met children in special schools they're likely to be at the very mild end of the spectrum, and you won't have met children with Down's syndrome at the very severe end of the spectrum, because they would never get to school.”* And it, those words were the words that I was haunted by, I guess, as I went through the decision process.
Severity had been one of the things that you had talked about together beforehand. And did anybody sort of ever say well this is how we could find out about the extent of ?
No, they told me it was impossible to find out. And to be honest the two ends of the spectrum worried me and my husband. We worried about having a child with very severe Down's syndrome, who would perhaps die shortly after birth. And we worried about having a child with very mild Down's syndrome who would perhaps out-survive us by many years. Yeah, so it was those two extremes that concerned us and we didn't, we didn't resolve that, really. No-one was able to, we were told it was impossible to know which end of the spectrum the baby was.
You've got sort of two groups of information. I mean, the first set that you identified was about the process at the termination, and getting information about that. And then there's information about Down's syndrome as a condition and what it would be like to live with. I mean, thinking about those two groups, do you feel that you got sufficient answers beforehand? What else would have helped?
I think perhaps we did make the decision too quickly. And I think I would probably now feel more at ease with the decision that we made had I perhaps spoken to people who were able to tell me more about the condition and what it would involve for us as a family. I don't think I really investigated enough. I didn't push enough for the information. I was just so terrified, firstly by the prospect of living with a child at either end of the spectrum, and secondly by the prospect of having to have a termination and go through labour.
* It is now more common that Down's syndrome children at the mild end of the spectrum are educated in main stream schools. Whereas those with more difficulties are educated in special schools.
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