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. 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).