Within the current political culture, childbirth has become a business-like, medicalised event that must be managed and made economically viable. The need for the National Health Service to be prudent and limit long term public health expenditure has been covertly demonstrated in the National Maternal Programme for Fetal Abnormality, specifically neural tube defects and Downs Syndrome (Green, 1994; Cuckle, 1998). Nationally, antenatal anomaly screening allows the diagnosis and selective abortion of those fetuses identified as suffering serious congenital malformation.
However not all conditions of fetal abnormality are aborted, the selection criteria appears to include only those fetuses who are either incompatible with life or whose disability would result in possible mental incapacity and probable life-long dependency (Lee, 2000). In keeping with the National Institute for Clinical Excellence Guidelines for Antenatal Care (2003) pregnant women should be offered an ultrasound scan to screen for structural anomalies, ideally between 18-20 weeks gestation, by an appropriately trained sonographer and with equipment of an appropriate standard as outlined by the National Screening Committee.
While ultrasound scanning may be offered routinely, what is possible to observe and the implications of so doing, are ever changing. It is essential, therefore, to ensure that regardless of the screening / diagnostic test being carried out, that pregnant women are fully informed of all possibilities before giving their consent (Ferguson, 2001). Some argue that the routine use of ultrasound in pregnancy has never been evaluated (Robinson and Beech, 1993) and can reveal information that women may not wish to know (Straham and Green, 1993).
Venn-Treloar (1998) found that woman were being screened for Downs Syndrome by having measurements taken of the nuchal translucency without consent being obtained. Many mothers attend for ultrasound scan believing that this is designed to confirm that their baby is well. Women do not always understand that the purpose of the scan is to detect abnormalities. The staff responsible for detecting and investigating abnormalities need to be trained in the emotional care and support that women need around this time (Thomas, 1997).
For many women it is only when they are presented with abnormal scan findings that they start to consider the implications of these findings. Many authors have reiterated the importance of childbearing women being provided with information in order that they make informed choices (Stapleton et al, 2002). Many of these choices such as whether to undergo screening tests for fetal abnormality have important implications for the woman and her family.
Making choices and putting them into operation involves complex processes influenced by many factors including information obtained from midwives (Levy, 1999). Before embarking on any prenatal tests Moore (1997) suggests that parents should consider what they will do with the information they receive. This will be based on a number of factors including concern about the effects that a child with a disability will have on the existing family members and concern for the developing baby.
It is now well documented that through every stage of prenatal diagnosis and the decision making process parents need support and information (Dimavicius, 1997). Women who are told that their unborn baby has an abnormality experience shock and grief. The decisions they make will effect the rest of their lives. Following immediate or belated diagnosis of abnormality in their baby, what parents need most of all is the knowledge that it is safe to express all their feelings of disappointment, shame and grief without being accused of rejecting the baby or failing as parents (Raphael-Leff, 1991).
The importance of effective, compassionate care around the time of diagnosis of severe fetal abnormality cannot be emphasised too strongly (Pelly, 2003). No-one enjoys giving bad news, which is perhaps why so many people do it badly. Breaking bad news of a fetal abnormality is akin to communicating a failure. It is emotionally demanding on both sides. The way parents receive the news is remembered for a very long time (Jupp, 1992 ; Leonard, 1994 ; Dear, 1995 ; Dowling, 1995 ; Martin, 1995).
Quinne and Pahl (1987) studied parental reactions to the news of severe fetal abnormality and found that two-thirds of parents were dissatisfied with the way they were given the information about their baby’s condition. Robb (1999) highlights the need for maternity services to develop specialist counselling for those responsible for disclosure of information regarding birth defects. Pelly (2003) in a qualitative study interviewed sixteen women regarding the care they had received in a fetal medicine unit.
Some found the information they were given was inconclusive thus contributing to difficulties in the decision making process. Issues of validity regarding this study include that those who agreed to be interviewed, sixteen out of seventy-six, were more likely to articulate their feelings than those who did not respond and the sample number was small. Dowling (1995) questioned how health professionals fully understood the sensitivity of this area of practice and highlights the need for suitable training in this important but often neglected field.
It is strongly recommended that the named midwife accompanies the Obstetrician or Genetisist when giving bad news of a fetal abnormality to a woman. It is also important that her partner or another close family member is present. The midwife may remain with the woman after she has been given the diagnosis to provide continuing support and answer any further questions she may have (DHSSPS, 2003). An accurate insight into women’s feelings will lead to the most sensitive and therefore most therapeutic care possible (Cole-Arsenault and Marshall, 2000).
Robinson (2001) studied women who had screened ‘high-risk’ in the quadruple test but went on to deliver normal babies. When a pregnant woman is placed in a position of uncertainty about her fetus she may distance herself from it (Rothman, 1988 ; McGeary, 1994 ; Lee, 2000 ; Robinson, 2001). Raphael-Leff (1991) refers to women who have been given bad news about their fetus as being in an emotional dilemma. These women may hesitate to commit themselves emotionally to their fetus as they may be unsure as to whether or not they will continue the pregnancy.