Biomedical Engineering Reference
In-Depth Information
higher, but in whom the invasive test results later revealed normal foetal
chromosomes. After the high risk information, the women were offered an
invasive test to confi rm or dismiss a Down syndrome diagnosis. When the
results from the invasive tests were confi rmed as negative (no indication of
Down syndrome) approximately four weeks after the scan, they were also
offered a follow-up ultrasound scan in gestational week 18-20. The women
were recruited consecutively from those who received high risk results in a
trial of foetal screening in the Stockholm region in 1999-2002 (Georgsson
Öhman
et al
. 2006). They were between 23 and 42 years old, expecting their
fi rst or second child, and had risk scores ranging between 1:20 and 1:250.
Six of the women who were older than 35 received risk scores that in effect
were not higher than their age-related risk.
The women were interviewed, in their homes, on three occasions: fi rst
after the early ultrasound scan and the risk information, secondly after the
invasive test and confi rmation of normality and fi nally two months after the
birth of a healthy baby.
7
The interviews are seen as stories told by the women
about their experiences of the ultrasound screening and the period following
the high risk information, where the women also had the opportunity to
add new experiences and retrospective refl ections through the follow-up
interviews. In this chapter, the focus is on how the women try to make
sense of their experiences and how issues of normality and deviance (of
the baby as well as the pregnancy) surface in this process. Here, certain
themes seem to be of particular interest: (1) the way the women account
for their understanding of the risk score: what is a high, low or 'normal'
risk, how the risk score is calculated and how it can be made more concrete;
(2) the women's refl ections on the normality of the baby, and also on their
diffi culties in thinking 'rationally' about the baby; (3) the meaning of the
high risk information and re-evaluations of this information after the healthy
baby is born.
Understandings of a high risk score
Generally, the women said they had looked forward to the ultrasound
examination, and described their experiences of the scan, as such, in positive
terms, although a few had been worried about something being wrong with
the baby even before the scan. When talking about their reactions to the
high risk information that they received after the scan, the six women who
were older than 35 years described the high risk information as more or less
in line with what they had expected, or not worse. When the remaining 14
women talked about their fi rst reactions to the high risk score, they all used
expressions describing something unexpected and shocking: 'it was a shock',
'tragic', 'everything became dark' it was 'a slap in the face'. Many of them
described the period after being given the information as 'a vacuum' and
that they took 'time-out' from the pregnancy while waiting for the results
from the invasive test. This 'withholding' of the pregnancy, which we have
