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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 <strong>byronchild</strong> 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
this degree of ‘false positive’ stress over the wellbeing of their baby. Ordinarily, such anxiety would mobilise a mother’s protective instincts, and she would draw closer to her baby. However, this protective instinct is difficult to express when the mother is also considering abortion, and she is likely to protect One has to wonder at the sequelae for the ongoing mother-baby relationship when mothers have experienced this degree of ‘false positive’ stress over the wellbeing of their baby. herself through emotionally distancing from her baby and her pregnancy — to ‘not want to know about it anymore’ as the women above states — at least until reassuring results are received. Some woman report that this distancing has affected their relationship with their children long after birth and this anxiety and/or detachment, based on fear of abnormalities, can recur in subsequent pregnancies. 43 As midwife Anne Frye comments, ‘Nature never intended that parents would have such information. Pregnancy as a time of unconditional attachment is severely disrupted by the technology available today.’ 44 This difficult emotional situation, which pulls women in two directions, is echoed in the literature of prenatal diagnosis, which refers, for example, to ‘therapeutic termination’ of babies with abnormalities, as though the abortion is curing an illness, rather than enacting a socially sanctioned form of eugenics. When parents make the decision to terminate, often they describe it as being in their abnormal baby’s best interests, which may be true in a society that is so bent on eradicating individuals with conditions such as Down syndrome. As one woman said, ‘I didn’t want to give up my baby, yet I had to because I knew what the future held for all of us if I kept her.’ 45 Ironically, the stress that prenatal screening and diagnosis generates may create further risks to mother and baby. Research into the long-term effects of pregnancy stress concludes, ‘…pregnant women with high stress and anxiety levels are at increased risk for spontaneous abortion, and pre-term labour and for having a malformed or growth-retarded baby…’ 46 According to these authors (and the many papers that they review) offspring whose mothers were stressed in pregnancy have delayed development with alterations in brain and hormone systems as well as increased susceptibility to stress life-long. What is even more worrying is that, ‘The strongest effects on infant development and behaviour were found for pregnancy-specific anxieties such as fear of health and integrity of the unborn baby and fear of (pain) during delivery.’ 47 One also wonders about the effects of prenatal diagnosis on the child him/ herself. Are we, at some level, accepting the view that our children are commodities that we can subject to a quality control test and reject if faulty? How will our children feel if they discover that our acceptance of them was so conditional? How will these experiences affect our subsequent role and expectations as parents? Prenatal diagnosis is also said to benefit women through forewarning of their baby’s abnormality. This may be true for some women, but others may resent their loss of enjoyment of pregnancy. 48 Discovering the baby’s problems during Photo by Katrina Folkwell pregnancy is also a very different experience to discovering this at birth, when Mother Nature hormonally primes new mothers to fall in love with their babies. Some parents have also appreciated the opportunity to recognise their baby’s disability themselves, even days after the birth. 49 This article has focused mainly on the experience of women whose screening result is positive, especially false positive. However, the promise of prenatal diagnosis — to prevent the birth of babies with abnormalities — also has an influence on those who receive a ‘false negative result’: ie, their test is normal but they give birth to an affected baby. In one study, parents of Down syndrome babies who had been misdiagnosed as normal had more problems adjusting, including more feelings of stress, blame and anxiety, than those who did not have a test. 50 Such parents are increasingly litigating for ‘wrongful birth’, with one successful case in Brisbane (Australia) in recent years. Such litigation further pressures both carers (for whom non-direct counselling is already challenging) and <strong>byronchild</strong> 21
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Page 5 and 6: Editor/Creative Director Kali Wendo
Page 7 and 8: At that age, experiences of loving
Page 9 and 10: Many structures seem to be created
Page 11 and 12: Circumcision Letters and Opinions I
Page 13 and 14: Once I met the mutilators and circu
Page 15 and 16: will grow to understand the importa
Page 17 and 18: Photo and artwork by Lisa Engeman .
Page 19 and 20: Down Syndrome: Is honest, accurate
Page 21: syndrome babies, for whom 1 in 4 (2
Page 25 and 26: 9. Biggio JR et al. An outcomes ana
Page 27 and 28: The Healing By Scott Noelle Embraci
Page 29 and 30: As we free ourselves from the shack
Page 31 and 32: positive effects are on the compete
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Page 35 and 36: A Breech Birth at Home By Tania A K
Page 37 and 38: Photo by Lisa Engeman Compiled by S
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