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special feature
of abnormality. 30 Rothman (1988), who
conducted extensive interviews with
women who had experienced prenatal
diagnosis, noted, ‘parents can be
incapacitated by ambiguous diagnoses’.
Other research shows that many women
will choose to terminate their pregnancy
rather than live with such uncertainty.
31
Obviously there is a great need for
high-quality counselling both before
and after testing. Specialised genetic
counsellors are the appropriate professional,
and a counselling session — ideally
provided to all women considering
testing — is recommended for those
with positive screening or diagnostic
tests. Genetic counsellors are, however,
a part of the industry of prenatal diagnosis,
whose purpose is to reduce the
number of live-born babies with Down
syndrome. This may make it difficult
for them to provide impartial information.
One analysis of all the written
information provided by carers and
counsellors in the UK showed very little
information about, and a negative
attitude towards, people with Down
syndrome. 32 Thornton et al (1995) note,
‘High uptake of prenatal blood tests
suggests compliant behaviour and need
for more information.’
Prenatal diagnosis, and the industry
that supports it, is pointless unless the
majority of women with affected babies
decide to terminate their pregnancies.
Termination after prenatal
diagnosis
Prenatal diagnosis, and the industry that
supports it, is pointless unless the majority
of women with affected babies decide
to terminate their pregnancies. Although
women may consider this when they are
choosing whether to have the screening
test, they are unlikely to realise (or to
be told) exactly what this entails until
they actually confront this situation for
themselves.
Early termination — involving a
straightforward curettage (or D&C) — is
only possible up to around 14 weeks,
which will be hurried if a woman has
had her CVS at 11 to 12 weeks then a
2 week wait for results. Later termination
involves induction of labour, which
can be as long and difficult as a fullterm
labour, and the baby may be born
byronchild 20
alive but unviable. In one study, average
time from induction to delivery for a
mid-pregnancy termination was 18 to
30 hours, depending on the method
of induction. 33 Some centres offer a
‘dilate and evacuate’ termination when
the pregnancy is around 14 – 18 weeks,
which involves a general anaesthetic for
the mother, while the surgeon extracts
the fetus in pieces.
If termination is considered after
amniocentesis at 15 to 16 weeks plus 2
weeks results, not only will the mother
be feeling her baby moving, but, by 20
weeks, the baby is only a few weeks
away from the time when it could survive
with intensive care — around 24
weeks. Furthermore, after 20 weeks, the
baby becomes legally viable, and a death
certificate and other paperwork must be
filled out. The baby must also be named,
and the baby’s body must be properly
disposed of by burial or cremation.
Early termination has been the goal
of prenatal diagnosis programs, with the
presumption that it will be less traumatic
for the mother. However while termination
for fetal abnormality in the first
trimester is medically less complicated
than later in pregnancy, there is little
evidence that the distress for the women
is any less. 34 Some women interviewed
by Rothman (1988)
felt that seeing the
baby afterwards,
which is only possible
after a late termination
involving
an induced labour,
was (or would have
been) helpful in their
grieving process.
Although CVS
and amniocentesis
are almost always accurate, the system
that supports them can make mistakes.
In one UK hospital, two mothers’ results
were swapped and the mistake was only
discovered when a mother whose amniocentesis
was reported as normal gave
birth to a baby with Down syndrome. 35
One post-mortem survey found an error
in 1 baby out of 128 diagnosed by amniocentesis
or CVS, and 3 normal babies
among 215 aborted because of abnormal
ultrasound results. 36 And while termination
is regarded as the end of the process
of prenatal diagnosis, UK research
shows that at least a quarter of women
who undergo later termination are significantly
distressed two years later. 37
Eve’s apple: the consequences of
knowing
Pregnant women are the target and the
supposed beneficiaries of this large and
increasingly complex industry, yet there
is surprisingly little written about their
experiences and opinions. Technological
obstetrics makes the assumption that
more knowledge is better, but, like Eve’s
apple, the knowledge that we gain
through prenatal diagnosis can cast us
from our pregnant paradise, with major
sequelae for ourselves, our offspring
and our families.
Australian research suggests that
we, like most women around the world,
have a difficult time making sense of
this complex area, especially the crucial
distinction between screening and
diagnostic tests. Perhaps this reflects
the difference between our intellectual
understanding of, and our emotional
reaction to, a positive screening test. For
example, a health professional reported
that she felt that her positive screening
result was … ‘a disaster’. That evening
she was unable to sleep, and felt like
crying desperately. The next day she
described herself as being ‘out of control’.
Another woman described the four
weeks of waiting as the most difficult
of her life. She was nervous, tearful and
hypersensitive, and she decided to abort
the fetus if it was abnormal... serum
screening had struck her down… she
could not believe in a healthy baby until
she held it in her arms. 38 Other women
have described their reactions to a positive
screening result:
‘I was totally shattered, frightened
out of my wits.’
And:
‘I said to the midwife who told me
the results: “It’s all gone wrong, it’s all
gone wrong. I don’t want to know about
it anymore”.’ 39
Many mothers still remain anxious
even when the results are reported as
normal. One mother, who said that she
had been ‘totally reassured’ by a normal
amniocentesis result, asked for a paediatrician
to check her baby for Down
syndrome immediately after the birth. 40
For the women whose babies are found
to be abnormal, the decision becomes,
as Rothman (1988) calls it, ‘The tragedy
of her choice’ — to terminate a wanted
pregnancy or to continue with the
knowledge that her baby will be affected,
with the possibility of a stillbirth or a
child with a life-long disability. Research
indicates that maternal grief is the same,
whether a baby with a lethal abnormality
is aborted or stillborn. 41,42
One has to wonder at the sequelae
for the ongoing mother–baby relationship
when mothers have experienced