Complications of Pregnancy: A Case Study
This assignment will be written in first person to demonstrate my own learning and knowledge as advocated by Fullbrook (2003). The aim is to carry out a woman centred care profile on a client from clinical practice. An analysis of relevant evidence in relation to the implications of prenatal screening and the care management of women with congenital abnormality diagnosis will be conducted. A critical appraisal on the role of the midwife in this case study will also be undertaken.
For the purpose of maintaining confidentiality in accordance with the Nursing and Midwifery Council (NMC) Code of Professional Conduct: standards for conduct, performance and ethics (NMC 2004a) the pseudonyms Lucy and Matt Brown will be used for the client and her husband throughout this assignment.
The word 'baby' will be used as far as possible in this care profile as previous studies have found this term preferable to fetus, products of conception or the pregnancy (Atik 2002, Colgan 1994 and Leroy 1988).
Lucy was chosen for this case study as I had built up a good relationship with her and Matt during their time in my care and the unusual nature of their case made it stand out. I also have a particular interest in this area of midwifery.
An unsatisfactory outcome for Lucy and Matt was discovered when the baby being carried was found to have signs of possible congenital abnormality. I would suggest that they had not received optimal care management during the pregnancy and subsequent termination of the pregnancy.
Although there is a wealth of information on screening and diagnostic tests available and the psychological management when fetal abnormality has been diagnosed there is actually little published literature on the midwives role in caring for the pregnant woman undergoing termination for fetal abnormality. For this reason it would be a valuable learning experience to determine what the recommendations for care should be and how other clients experiencing a similar outcome could avoid unnecessary upset and confusion.
The assignment will conclude with a summary of key points and recommendations to improve future midwifery practice.
This case study is based on the care that Lucy and Matt received during their first pregnancy when there were concerns about the wellbeing of their baby from the ultrasound scan results.
Lucy is a twenty six year old primigravida and has been married to Matt for five years. Lucy met with her community midwife, Sue (a pseudonym) for a pre booking chat at 6 weeks gestation, as she was quite anxious. She had previously seen her GP about being referred for fertility treatment and during this time had discovered she was pregnant. She had been taking folic acid supplements prior to becoming pregnant. Folic acid supplements of 400 micrograms per day from preconception to 12 weeks gestation has been found to decrease the likelihood of the baby suffering from neural tube defects (Department of Health 2004).
Both Lucy and Matt were excited about the pregnancy and had already told close family and friends prior to their first antenatal appointment. The aim of antenatal care is to assess the progress of the pregnancy an a way that supports the holistic needs of the client, that promotes maternal and fetal well being and plan appropriate care and interventions as necessary in partnership with the woman (Viccars 2003).
The Browns attended a booking appointment with Sue at an antenatal clinic at a local community hospital when Lucy was 12 weeks pregnant to commence antenatal care. The Scottish Executive (2001) Framework for Maternity Services in Scotland document outlines the need to have locally accessible midwifery care with multidisciplinary involvement as and when necessary, this was beneficial in enabling Lucy and Matt to attend local services within their own community.
The Department of Health (DOH) Changing Childbirth Report (DOH 1993a) points out that this initial antenatal appointment can feel rushed and can focus mainly on screening tests for abnormalities, it is therefore important that women receive ample counselling on this to help them decide on the best option for their circumstances. This signifies that midwives providing such information have to be knowledgeable about the tests, anomalies screened for and the implications of the results (DOH 1993b). The Changing Childbirth Survey (DOH 1993b) revealed that without adequate knowledge or training midwives give significantly less information. Screening is defined by the Scottish Executive (2001 page 91) as a
'mass examination of the population to detect specific illnesses'.
Lucy had received written information regarding routine blood tests and screening tests prior to booking. Sue discussed the implications of the tests further and it was Lucy's intention to have all blood tests and some screening tests offered to her. NHS Health Scotland (2004a) recommend routinely testing pregnant women for their full blood count, blood group and Rhesus factor and for rubella, syphilis, hepatitis B and HIV status. Lucy agreed to have these blood tests carried out by Sue at the initial appointment and informed consent was obtained in line with NMC (2004a) guidelines. Lucy and Matt also chose to have cystic fibrosis screening, this involved both parents providing a saliva sample.
Sue went on to discuss a further screening test, which is carried out between 15 and 18 weeks gestation, called an AFP test. This involves testing a maternal blood sample for alpha-fetoprotein and human gonadatrophin levels (NHS Health Scotland 2004b), which can be indicators for Down's Syndrome, neural tube defects and sex chromosome defects but the couple declined this test.
At booking appointments the woman can be bombarded with leaflets, advice and information regarding the pregnancy it is therefore important that she is given time to ask question and indeed that she has understood the information. The midwives rules (NMC 2004b) urges midwives to ensure that advice given is accurate and appropriate to the woman's needs. Dunkley (2000) advocates the midwife's role as health promoter being a significant one and one that it needs to be implemented from the early stages of pregnancy. This is a view shared by Blakey (2003) who emphasises the importance of education in empowering women to make choices about their care.
Obstetric, medical and family histories were sought to identify if there were any risks to this pregnancy and baseline recordings of blood pressure, urinalysis and weight were taken on which to compare the progress of the pregnancy (Viccars 2003). Anything out of the ordinary would be recorded on Lucy's risk card however nothing of note was highlighted. A booking ultrasound scan had been arranged to coincide with this appointment. This is sometimes called a dating scan as one of the main purposes is to measure the baby to agree on its estimated due date, it also looks for a heart beat and the number of babies, they can sometimes be used for prenatal diagnostic screening (Midirs 2005a and NHS Lothian 2003). In Lothian they do not routinely carry out more than one scan (NHS Lothian 2003), however other guidelines in the UK appear to recommend an early booking scan and a later anomaly scan at around 20 weeks gestation (Lacy and Harcombe 2004, Midirs 2005a, NICE 2003, RCOG 2000), particularly in the case of Down's syndrome which NICE (2003) identified as having a 60% detection rate and propose this will be increased to 75% by 2007. It is the midwives role to ensure that the clients understand the implications when opting for screening and that it is not purely a routine investigation but something that could have profound consequences on the future of the pregnancy (Midirs 2005c).
There has been little published evidence on the safety of ultrasound scanning (Midirs 2005b), although women find them not threatening but reassuring in the majority of cases, however as they were introduced in the 1950's Sullivan and Kirk (2003) purport that any adverse effect would have become apparent by now. Wagner (1999) reported that it has been found that scanning during pregnancy makes no difference to the outcome of the pregnancy, he goes on to say that there is no value of routinely scanning women, however this view fails to take into account the assurance women and their partners experience when visualising their baby (Sullivan and Kirk 2003). Conversely this could potentially give false reassurances to parents, as false negative results could ensue from diagnostic scanning (Midirs 2005b). False positive results can also be highlighted potentially giving rise to unnecessary invasive diagnostic procedures or even loss of pregnancy through miscarriage (Midirs 2005a). In a study by Spencer et al (2003) they found that a combined screening programme if carried out in the first trimester was more efficient than serum tests later on in pregnancy and detected fewer false positive results.
During Lucy's scan the sonographer indicated that there was some problem. It appeared from the scan that the baby had an increased nuchal translucency this is a measurement of fluid under the skin behind the baby's head and neck, which if increased could be indicative of congenital abnormality (Sullivan and Kirk 2003). Congenital abnormality can be defined as a malformation in physiology, formation or appearance (Turner 2003), occurring before birth (Kohner and Henley 2002). Around 2% of babies are born with congenital abnormalities and regardless of screening tests performed, not every mother would choose to discontinue the pregnancy or even wish to know in the first place (Turner 2003). The causes can be attributed to chromosomal or genetic abnormalities, teratogenic abnormalities, teratogen is defined as any process that can cause a congenital defect such as the drug thalidomide, multifactor causes involve at least one genetic and teratogenic anomaly but the main cause of congenital abnormalities remains unknown (Turner 2003).
The sonographer reported seeing a cyst like structure measuring 11 mm behind the head and neck of the baby, which she felt was consistent with cystic hygroma, an abnormality of lymphatic tissue in the neck area (Johnston et al 2003), which can develop into a tumour after birth or be an indication of Down's syndrome or Turner's syndrome (Bronstein et al 2003). However Buckley (2005) argues that like most screening test the majority will actually prove to have no abnormality. This diagnosis caused Lucy and Matt extreme distress and they attended the main city hospital two days later to speak to the prenatal diagnostic midwife, Kate (a pseudonym), who provides information and support for people who have received bad news following ultrasound. Her role is to build a relationship of trust and mutual respect with the Browns and to give honest information and not try to instil false hope (Turner 2003). At this point Lucy was re-scanned and the nuchal translucency was found to have increased to 12 mm. Kate went on to explain the options available: invasive diagnostic testing; anomaly ultrasound scan; do nothing at the moment. Matt and Lucy decided they wanted some time to think over their options.
The most common invasive diagnostic test is amniocentesis, which involves collecting a sample of amniotic fluid through a fine bore needle inserted abdominally under ultra sound guidance (Sullivan and Kirk 2003). One drawback to this procedure claims Sullivan and Kirk (2003) is an increased risk of miscarriage over chorionic villus sampling (CVS), the other invasive test, of around 1% and a risk of depleting amniotic fluid following the procedure of over 2%. Another weakness to amniocentesis is that it can only be preformed from around 15 weeks gestation or beyond (Buckley 2005) when the mother is much more likely to be feeling movement and the pregnancy will be beginning to show. Buckley (2005) asserts that the reason CVS was introduced was so that parents opting for termination of pregnancy could do so at an earlier stage in the pregnancy when it was a less complicated procedure.
CVS, which can be performed from about 10 weeks, is carried out by an experienced clinician taking some of the chorion of the placenta, that contains the same cells as the baby (Sullivan and Kirk 2003). The chorion is closer to the baby than the amnion (Coad 2001), therefore CVS can have an increased risk of causing harm or injury (Buckley 2005).
By testing the fetal cells obtained during CVS they are able to identify if the baby has an abnormality and what type of disorder it might have. However Buckley (2005) argues that mosaic cells may mask both positive and negative results. Although Buckley (2005) goes on to disagree that amniocentesis carries a higher risk of miscarriage, maintaining that following sampling CVS carries a higher chance of women experiencing pregnancy loss. This is obviously an area that needs greater investigation.
Matt contacted Kate to tell her that Lucy wanted to go ahead with diagnostic testing. As the pregnancy was still at an early stage of 13 weeks the couple opted for CVS, so that they would have the results sooner. They attended the appointment with Kate.
Two days following the CVS Lucy and Matt returned to the hospital to discuss the results with Kate. The baby was diagnosed as having a sex chromosomal abnormality with karotype XO, called Turner's syndrome, this means only one sex chromosome exists the X chromosome with the Y chromosome, the male chromosome, missing and is replaced with O (Coad 2001). The extent of impairment cannot be determined from the diagnostic tests so it would be impossible for the Browns to know how affected their daughter would be prior to her birth (Johnston et al 2001). Kate offered the management options of continuing with the pregnancy or ending it to Lucy and Matt. The couple wanted to spend some time considering this but contacted Kate later that day saying they would like to go ahead with a termination. 2 days later Lucy and Matt attended a consultation with the consultant who counselled them and obtained written consent for the procedure in line with the abortion act 1967 (Scottish Office 1991).
As Lucy was now over 13 weeks pregnant this meant the termination option available to her involved inducing her labour by giving her 200mg of an oral hormonal medication called Mifeprisone. She was then advised to come to labour ward 2 days later to have 800 micrograms of misoprostol administered per vagina by a doctor under the guidelines of the abortion act 1967 (NHS Lothian 2001, Scottish Office 1991 and SCRH 2004).
Buckley (2005) puts forward a suggestion that the purpose of prenatal diagnosis is founded on the idea that most women with a positive result will go on to terminate the pregnancy.
No beds were available on Lucy and Matt's return to labour ward. After a discussion with the midwife in charge it was decided to admit Lucy to another ward in the unit, where I was working as a staff nurse. This was my first meeting with the Browns. According to (Kohner and Henley 2002) women experiencing termination for fetal abnormality should be awarded the same treatment as a woman experiencing any other pregnancy loss. However Moulder (1998) found from her research that often women having terminations earlier in pregnancy were treated as if they were on a conveyor belt, she goes on to report on how women experiencing later terminations did not experience the same feelings.
It is not standard practice to care for women having mid-trimester terminations for fetal abnormality anywhere other than labour ward at this particular unit. It was suggested in a personal communication (Herkes and Lilley 2005) that this was an exceptional circumstance and indeed that it was the only one of its kind known in the hospital.
The main disadvantage to caring for Lucy and Matt out with the maternity unit was that Lucy would not be treated with the one to one midwifery care that she would have received on labour ward (NHS Lothian 2001). Additionally the staff on the ward had not cared for women having mid trimester terminations as they were carried out in another unit. However I had experience of this and limited experience as a student midwife, which resulted in me taking over her care. The RCOG (1996) guidelines encourage the care during termination for fetal abnormality to be given by midwives, or if appropriately trained in labour and delivery, gynaecology nurses. It is apparent that this would not have been the case had I not been on duty and I would suggest that I did not have sufficient training to deliver Lucy and Matt's daughter without supervision.
Moulder (1999) found in her study that women experiencing pregnancy loss outwith maternity facilities were more likely to be dissatisfied with their care due to staff inexperience in caring for women in labour and subsequent delivery of a baby. This was admittedly a small scale study and could benefit from further research on a larger scale.
Good midwifery care around the issues of screening and diagnosis appears to be carried out as per local and national policies and guidelines as a whole. The care is based on good communication skills, woman centred, with a community based focus and midwives who are knowledgeable and skilled in delivering this.
The information regarding ultrasound scanning in pregnancy could at best be described as conflicting. Midwives should be encouraged to inform women that scanning can be used as a diagnostic tool and not merely an opportunity for them to see their baby.
The guidelines for the care of women having termination for fetal abnormality are now 9 years old and perhaps it is time that these were reviewed. In view of the fact that there is no specific midwifery guidelines except those laid down by the RCOG (1996) perhaps this an area that needs careful consideration from a midwifery viewpoint in the future.
This care study has highlighted the importance of good antenatal care and clarifies the need for good communication skills to be adhered in order to help integrate exceptional services such as those for termination of pregnancy following diagnosis of an abnormality into the primary midwifery arena.