The speed and development of prenatal diagnosis techniques has been little short of explosive (De Crespigny and Savulescu, 2002 ).

University Degree Subjects allied to Medicine

Introduction

The speed and development of prenatal diagnosis techniques has been little short of explosive (De Crespigny and Savulescu, 2002 ). The importance of psychological and psychotherapeutic help for women and couples following the prenatal diagnosis of a malformation is clearly mentioned in the literature (Leither et al, 2002). Following the introduction of the alpha-feta protein screening for neural tube defects in the 1970’s, low alpha-feta protein level for Downs Syndrome in the 1980’s, multiple markers seen on ultrasound in the 1990’s there is now, after the millennium, combined ultrasound and biochemistry for a more precise risk identification. These developments have radically changed the approach towards optimizing the sensitivity, specificity and positive and negative predictive values of screening (Evans et al 2002).

The choice of words used to describe a condition or to inform women about the level of risk of an adverse event occurring may significantly affect how that woman perceives that condition or risk (Abramsky and Fletcher, 2002). Some tests give definite answers, these are diagnostic tests such as amniocentesis or chorionic villus sampling. Other tests only indicate risk, such as the triple test or nuchal translucency scan, these are screening tests. Pregnant women should be informed about the purpose of any screening test before it is performed, and her right to either accept or decline the test should be made clear (National Institute for Clinical Excellence, 2003).

Midwifery literature reflects an increasing awareness of the psychological costs of screening to a mother (Van den Akker, 1995 ; Downie, 1994 ; Grayson, 1996 ; Massay-Davis, 1998, cited in Lee, 2000) and concern is now being raised about the possible psychological emotional and psychical effects of prenatal diagnosis on postnatal life. Midwives involved in prenatal screening need to be aware of their own feelings about screening and disability. They should be involved in the planning of any future antenatal screening programmes within their workplace and highlight factors such as lack of time and knowledge which may inhibit their ability to facilitate informed choice (Williams et al, 2002).

This assignment will evaluate the literature to determine the current state of knowledge around the area of prenatal diagnosis of fetal abnormality, existing practice and support networks for parents. Rees (1997) describes a literature review as a clear process that can be followed in three stages, locating the literature, extracting relevant detail and writing the review. Literature searches using the Midirs and Cinahl databases were carried out in preparation for this assignment. Further information was obtained from the medical library and sources including many support organisations available to assist parents.

This assignment will look at prenatal screening and diagnostic tests. Furthermore it will address the difficult choices that parents can face and the information they receive to help make these choices. Lethal and non-lethal abnormalities will be considered and the situation regarding termination of pregnancy in Northern Ireland. Finally grief and loss will be addressed and throughout the assignment, the focus will be on the midwives role in providing support to parents.

Main Body

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 ...

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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.

For those parents who are faced with a prenatal diagnosis of a non-lethal abnormality they need support firstly in accepting the diagnosis and then in planning towards the future. A system of clear referral pathways should be established so that pregnant women who require additional care are managed and treated by the appropriate specialist teams when problems are identified (NICE, 2003). These specialists will include, paediatricians, paediatric surgeons, paediatric nephrologists, plastic surgeons, fetal cardiologists and neonatal staff. It is helpful if parents can meet the professional team who will care for their baby after delivery and have a visit to the neonatal intensive care unit before the baby is born.

There are many support groups available to parents and the midwife is ideally placed to ensure that information about theses sources of help is readily available. The Downs Syndrome Association , The Association for Spina Bifida and Hydrocephalus and The Cleft Lip and Palate Association for Northern Ireland are some useful organisations. These, and many more are found in the Pregnancy Book issued by The Health Promotion Agency for Northern Ireland (2001) which is also recommended by the NICE guidelines (2003). Contact a family is a United Kingdom register of families whose children have rare disorders and by putting these families in touch with each other a network of support is established.

Edwins (2000) in a phenomenological study interviewed five women who knew their baby had Downs Syndrome and chose to continue their pregnancy. The findings were ungeneralisable and indicated that further research into the nature of professional support is needed. Despite limitations, some implications for midwifery practice involve formulating support mechanisms which include facilitating the processes of decision-making, grieving and coping.

Through an ultrasound scan or other prenatal tests parents may discover earlier or later in pregnancy that their baby has a serious abnormality. Professionals should not assume that when a baby has been found to have a lethal abnormality, the parents will wish to end the pregnancy. Even if a lethal abnormality has been diagnosed some parents may wish to continue the pregnancy even if the baby cannot be expected to survive, and they need support to help them through this time from all those involved in care. Continuing the pregnancy can give parents, women especially, time with their baby as well as time to prepare for their baby’s death. For some parents termination of pregnancy is unacceptable for religious or ethical reasons (SANDS, 1995).

In Northern Ireland legislation differs from England and Wales in that the 1967 Abortion Act does not apply. Instead, it is governed by The Offences Against the Persons Act, 1861, which renders it illegal for drugs or instruments to be used to procure an abortion. The Department of Health, Social Services and Public Safety accepts that abortion is legal in certain circumstances but unfortunately there is a lack of clarity around these circumstances resulting in confusing and inconsistent practices (Hughes and Kaufmann, 2001). Therefore the legal position of termination of pregnancy in Northern Ireland is at best uncertain. Case law exists for rape cases but not for fetal abnormality. The judicial review applied for in May 2003 by the Family Planning Association for Northern Ireland, failed to clarify matters.

In England and Wales legislation states that termination of pregnancy can occur up to 24 weeks gestation for social, medical or reasons of fetal abnormality. Between 24-40 weeks if serious fetal abnormality exists, it is left up to the discretion of the Obstetrician providing care.

It is vital that midwives working in the area of prenatal diagnosis are aware of current legislation regarding termination of pregnancy. Given the uncertainties or the legislative position in Northern Ireland practice tends to be based on case law which leaves both Obstetrician and mother vulnerable and uncertain (Hughes and Kaufmann, 2001). Realistic choices need to be offered sensitively, in order that parents can make the decision that is right for them. In order to decide whether or not to continue with the pregnancy, if that is an option, parents will need information. They will also need an opportunity to talk and ask questions about their baby (SANDS, 1995). Parents or women who are trying to make a decision about termination of pregnancy for fetal abnormality should be given information about SATFA (1995), an organisation which offers Support Around Termination for Fetal Abnormality and if appropriate, information about voluntary organisations dealing with the specific abnormality that has been diagnosed. SATFA offers support and information for those considering a termination of pregnancy and at every stage after that. ARC, Antenatal Results and Choices is an organisation which supports parents and provides information throughout the period of prenatal testing and diagnosis and also provide ongoing support to families.

Midwives are viewed by women as possessing special knowledge and skills in analytical decision making that will help in reaching the correct choice. Women often turn to midwives for help and advice in making difficult choices (Levy, 1999). No matter how serious the condition is that is diagnosed, it is important that the woman makes her own decision (Pelly, 2003). Although the woman must feel supported throughout the process. Dimavicius (1998) found that attempts to be non-directive can result in women feeling unsupported and even abandoned, therefore it is vital to adapt the correct approach for each individual woman.

Supporting parents whose baby has died and helping them to consider difficult and important decisions at a time of unbearable sorrow and anguish is one of the most challenging roles undertaken by the midwife. The way parents are cared for emotionally when their baby dies will affect them deeply (Thomas, 1999). An additional feature of grief, after a termination for fetal abnormality, is the burden of responsibility of having made the decision to end the pregnancy (Moulder, 1998). If a woman does not receive the emotional support she needs following the death of her child, her recovery is impeded (Jones, 1997). Memories are important to give parents a focus for their grief. Sensitively taken photographs of the fetus on its own or with family members can be kept in the notes if the parents do not wish to have them at the time (Thomas, 1997). Similarly a footprint or scan photograph may help parents acknowledge their baby’s existence, a necessary task of mourning is to accept reality (Worden, 1991).

The key to offering good quality emotional support is to judge what kind of help a woman needs and then to be able to offer it (Moulder, 1998). Society often expects mothers and fathers to share equally in the perinatal grief process because the child was a common bond between them. However, the mother and father can experience incongruent grieving and discordant coping mechanisms (Wallestedt and Higgins, 1996). Culturally our society expects men to be strong and to cope. In addition, men are concerned about the devastating effect grief is having on their partner, this in turn can inhibit their ability to grieve (Connolly, 1995). The midwife must be aware of all aspects of the grieving process to enable her to support the family and not only the mother in her care.

Conclusion

The focus of this assignment has been the role of the midwife in supporting parents following the diagnosis of fetal abnormality. The areas explored include screening and diagnosis, difficult choices, issues surrounding termination, grief and loss. Communication is seen by midwives to be central to the enhancement of care (Kirkham, 1979 ; Hicks, 1993). The Midwives Code of Professional Conduct (UKCC, 2002) mentions accountability in giving and sharing information and research suggests that where staff have been trained in communication skills, patient satisfaction and compliance are increased (Robb, 1999).

Interacting with grieving families can stir up painful emotions in the care giver and it is important for midwives to find ways to manage personal experiences of loss and bereavement, when attempting to help others (Thomas, 1999). Garel et al (2002) found that midwives felt emotional distress, when practising in this area, and expressed the need for more staff discussions and support groups within the hospital setting.

Pelly (2003) recommended for practice that written information should be given to all women before an ultrasound scan. This should state clearly the purpose of the test, that it is optional and what can and cannot be detected. When a fetal abnormality has been diagnosed the midwife has a key role in supporting women and their families.

Like many others areas in obstetrics, prenatal screening has been widely introduced before being fully evaluated. As there are possibilities of harm to mother, fetus and even the wider society there seems to be an urgent need for further empirical research into its effects, especially into those of the future emotional well-being of the child (Robinson, 2001).

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