The natural history of pregnancies with a diagnosis of Trisomy 18 or Trisomy 13; a retrospective case series

Background: Trisomy 18 (T18) and trisomy 13 (T13) are the second and third commonest autosomal aneuploidy syndromes respectively. While specific aspects of affected pregnancies have been documented in the literature, few studies document the overall natural history of the trisomies. This study aimed to examine the natural history (including diagnosis, pregnancy outcome, complications and survival) of T18 and T13 pregnancies in a setting where termination of pregnancy for fetal abnormality is not available. Methods: Cases were identified using birth registers, labour ward records, annual reports, medical records, ultrasound reports and reports from prenatal genetic testing. All identified T18 and T13 pregnancies in the study region from 2001 to 2012 were included. Individual chart reviews were performed for each case. Data were analysed using SPSS Version 20. Results: Forty-six T18 and twenty-four T13 pregnancies were identified. Most T18 cases (65%) were diagnosed prenatally, while only one third (33%) of T13 cases were prenatally diagnosed. Only three T18 pregnancies and one T13 pregnancy were electively terminated. A proportion of undiagnosed infants were delivered by emergency caesarean section. 48% (T18) and 46% (T13) infants survived following birth, for a median of 1.5 days (T18) and 7 days (T13). One T13 infant is currently alive over one year of age. Conclusions: This large series provides information for professionals and women regarding the natural histories of trisomies 18 and 13. These pregnancies can go undiagnosed antenatally without routine anomaly scanning. While many fetuses die in-utero, postnatal survival is possible

Intrapartum fetal deaths and unexpected neonatal deaths in the Republic of Ireland: 2011 – 2014; a descriptive study

Intrapartum fetal death, the death of a fetus during labour, is a tragic outcome of pregnancy. The intrapartum death rate of a country is reflective of the care received by mothers and babies in labour and it is through analysing these cases that good aspects of care, as well as areas for improvement can be identified. Investigating unexpected neonatal deaths that may be associated with an intrapartum event is also helpful to fully appraise intrapartum care. This is a descriptive study of intrapartum fetal deaths and unexpected neonatal deaths in Ireland from 2011 to 2014

Perinatal outcomes of reduced fetal movements: A cohort study

Background: The perception of reduced fetal movement (RFM) is an important marker of fetal wellbeing and is associated with poor perinatal outcome (such as intra-uterine death). Methods: We conducted a prospective study of women presenting with RFM over 28 weeks’ gestation to a tertiary-level maternity hospital. We examined pregnancy outcomes and compared them to a retrospectively collected control group delivering contemporaneously. Results: In total, 275 presentations were analysed in the RFM group, with 264 in the control group. Women with RFM were more likely to be nulliparous (p?=?0.002) and have an induction of labour (p?=?0.0011). 26.5 % (n?=?73) of cases were admitted following presentation with RFM, and 79.4 % (n?=?58) delivered on primary presentation. Overall, 15.2 % (n?=?42) women were induced for RFM specifically. Conclusion: This prospective study shows the increased burden of care required by those with RFM, including increased neonatal unit admission rates, increased induction rates and higher surveillance demands, demonstrating the need for increased attention to this area of practice

Experience of miscarriage: an interpretative phenomenological analysis

Objective: The objective of the study was to explore the experiences of those who have experienced miscarriage, focusing on men's and women's accounts of miscarriage. Design: This was a qualitative study using a phenomenological framework. Following in-depth semistructured interviews, analysis was undertaken in order to identify superordinate themes relating to their experience of miscarriage. Setting: A large tertiary-level maternity hospital in Ireland. Participants: A purposive sample of 16 participants, comprising 10 women and 6 men, was recruited. Results: 6 superordinate themes in relation to the participant's experience of miscarriage were identified: (1) acknowledgement of miscarriage as a valid loss; (2) misperceptions of miscarriage; (3) the hospital environment, management of miscarriage; (4) support and coping; (5) reproductive history; and (6) implications for future pregnancies. Conclusions: One of the key findings illustrates a need for increased awareness in relation to miscarriage. The study also indicates that the experience of miscarriage has a considerable impact on men and women. This study highlights that a thorough investigation of the underlying causes of miscarriage and continuity of care in subsequent pregnancies are priorities for those who experience miscarriage. Consideration should be given to the manner in which women who have not experienced recurrent miscarriage but have other potential risk factors for miscarriage could be followed up in clinical practice

An exploration of women's experience of taking part in a randomized controlled trial of a diagnostic test during pregnancy: A qualitative study

Objective: To explore pregnant women's views of participation in a clinical research trial while pregnant. Design: Prospective nested qualitative cohort study embedded within a national, multi‐site randomized controlled trial of a diagnostic test for preeclampsia: Placental Growth Factor. One‐to‐one in‐depth semi‐structured interviews were undertaken with 19 women who had recently participated in the trial at a single recruiting site. The interviews were conducted in private, recorded digitally and transcribed verbatim. Setting: Single tertiary maternity hospital currently recruiting eligible women onto an on‐going randomized controlled trial (NCT 02881073). Participants: Women who had participated in the PARROT Ireland randomized controlled trial during their recent pregnancy. Methods: Thematic analysis was utilized. Each line of the transcribed interviews was coded into a category by two researchers. The resultant categories were reviewed, and those with similarities were pooled allowing the development of themes. Main Outcome Measures: Women's opinions and experience of participation in a randomized controlled trial of an interventional diagnostic test during their pregnancy. Results: Four major themes were identified as follows: (a) Understanding of preeclampsia, (b) Motivators for clinical trial participation, (c) Barriers to decision making and (d) Influence of PARROT Ireland on pregnancy experience. Conclusions:Women are generally interested and positively inclined to participate in research during pregnancy. The potential of risk is an important consideration for eligible pregnant woman. Information and support by both researchers and clinicians are paramount in aiding women's understanding of a research trial

Oocyte donation pregnancies-non-disclosure of oocyte recipient status to obstetric care providers and perinatal outcomes

Background: Oocyte donation pregnancies-non-disclosure of oocyte recipient (OR) status to obstetric care providers and perinatal outcomes. Many studies report a higher rate of pregnancy-induced hypertension (PIH) and severe pre-eclampsia (PET) in OR pregnancies. The objective is to determine the rates of non-disclosure of OR pregnancy to obstetric care providers and also the rates of perinatal complications. Method: This was a retrospective review of all oocyte recipient (OR) pregnancies, who subsequently delivered at Cork University Maternity Hospital, between 2007-2012 inclusive. Obstetric case notes were reviewed to investigate perinatal outcomes and whether OR status had been documented (unambiguously, in code or not at all). Results Less than one-third (30.2%; n=32/106) had unambiguous documentation, one-third (33%; n=35/106) had no documentation and the remainder (36.8%; n=39/106) had a code familiar only to their obstetrician. There was a high rate of gestational hypertensive disorders (28.3%; n= 30), most frequently occurring with multiple gestation. Conclusion There was a low rate of clear documentation of OR status. Gestational hypertensive disorders occurred with increased frequency

Influence of cost on contraceptive choices amongst university students

Introduction: Cost remains a major barrier in accessing effective contraception especially long-acting reversible contraception. This study sought to assess the current contraception choices amongst university students including the influence of cost on choices. Methods: A cross-sectional study of Irish university students at University College Cork was undertaken. The online survey examined current contraception use, justifications for this choice of contraception and the effect that hypothetical provision of free contraception would have on their choices. Results: A total of 1,840 sexually active students completed the online survey. Condoms were used by 1,020 students (55.4%), the combined pill was used by 729 (39.6%) and ‘coitus interruptus’ was used by 169 students (9.1%). Statistically males were more likely to spend under €50 annually (47.6%, n=182 of 382, p<0.001) and female students were more likely to spend over €100 on contraception (41.2%, n=470 of 1,141, p<0.001).By removing cost, 394 (34.3%) sexually active women would definitely change contraception, with another 250 women (21.8%) considering changing. Discussion: Students often rely on unreliable or user-dependent methods of contraception. Our study has demonstrated that cost influences contraceptive choice with nearly half of the women surveyed stating they would change contraception if cost was removed

The public awareness of stillbirth: an Irish population study

Objective: To evaluate the general population's awareness of stillbirth. Design: A cross‐sectional telephone population survey. Setting: A nationally representative sample of the Irish adult population. Sample: In all, 999 members of the Irish population were selected by random digit dialling. Methods: Data were analysed using descriptive and inferential statistics. Binary logistic regression was used to assess the odds of identifying risk factors for stillbirth. Main outcome measures: Public knowledge of incidence, risk factors, causes and social awareness about stillbirth. Results: Only a minority, 17%, of respondents correctly identified the incidence of stillbirth. Men and those aged over 45 years were more likely to say they did not know when a stillbirth occurs. Over half, 56% of respondents were unable to identify any stillbirth risk factors. Half of respondents, 53%, believed that the cause of stillbirth was due to a problem with the baby, 39% a problem with the mother, while 31% believed stillbirth occurred as a result of the care provided to the mother. The majority, 79%, believed that all stillbirths should be medically investigated, although women were more likely to suggest this (82% versus 76.4%; P = 0.043). Stillbirth had been represented in traditional and online media for 75% of respondents and 54% said they personally knew someone who had a stillbirth. Conclusions: There is a lack of public knowledge concerning the incidence, risk factors and causes of stillbirth. Improved public health initiatives and antenatal education are warranted to increase awareness of stillbirth risk factors and to improve care and monitoring during pregnancy. Funding: No funding was granted for this study. Tweetable abstract: Irish population study shows low public awareness of stillbirth incidence, risk factors and causes. Plain Language Summary: This study aimed to find out what the general public know about the risk factors associated with stillbirth and whether stillbirth can be prevented. Many stillbirth risk factors can be identified and when they are, healthcare professionals can monitor pregnancy and hopefully reduce the possibility of a baby dying before birth. A sample of 999 people from the Irish population was surveyed by a professional telephone polling company for this study. The results of this study found that most people did not know how common stillbirth was and also believed that only a minority could be prevented. Most people were not able to identify any risk factors that can lead to stillbirth. Most people knew someone who had had a stillbirth and likewise most people believed that all stillbirths should be investigated to find a cause. It is possible that some people do not know the difference between stillbirth and miscarriage and this question was not asked in this study. Six people did not complete the interview as the topic of stillbirth was too sensitive. It is possible that these people had experienced a stillbirth themselves and so their results are not included. This study highlights the importance of increasing public awareness about stillbirth by providing clear information to women and their partners that there are risk factors associated with stillbirth that can be identified and monitored. The results of this study suggest that these risk factors could be highlighted in antenatal preparation classes and public health campaigns

Fetal medicine specialist experiences of providing a new service of termination of pregnancy for fatal fetal anomaly: a qualitative study

Objective: To explore fetal medicine specialists' experiences of caring for parents following a diagnosis of fatal fetal anomaly (FFA) during the implementation of termination of pregnancy (TOP) for FFA for the first time. Design: Qualitative study. Setting: Fetal medicine units in the Republic of Ireland. Population: Ten fetal medicine specialists from five of the six fetal medicine units. Methods: nvivo 12 assisted in the thematic analysis of semi-structured in-depth face-to-face interviews. Main outcome measures: Fetal medicine specialists' experiences of prenatal diagnosis and holistic management of pregnancies complicated by FFA. Results: Four themes were identified: 'not fatal enough', 'interactions with colleagues', 'supporting pregnant women' and 'internal conflict and emotional challenges'. Fetal medicine specialists feared getting an FFA diagnosis incorrect because of media scrutiny and criminal liability associated with the TOP for FFA legislation. Challenges with the ambiguous and 'restrictive' legislation were identified that 'ostracised' severe anomalies. Teamwork was essential to facilitate opportunities for learning and peer support; however, conflict with colleagues was experienced regarding the diagnosis of FFA, the provision of feticide and palliative care to infants born alive following TOP for FFA. Participants reported challenges implementing TOP for FFA, including the absence of institutional support and 'stretched' resources. Fetal medicine specialists experienced internal conflict and a psychological burden providing TOP for FFA, but did so to 'provide full care for women'. Conclusions: Our study identified challenges regarding the suitability of the Irish legislation for TOP for FFA and its rapid introduction into clinical practice. It illustrates the importance of institutional and peer support, as well as the need for supportive management, in the provision of a new service. Tweetable abstract: The implementation of termination services for fatal fetal anomaly is complex and requires institutional support

Modifiable risk factors for stillbirth: a literature review

A stillbirth is defined as an infant born weighing 500 g and/or more or at a gestational age of 24 weeks who shows no signs of life. Having a stillborn baby has a wide range of consequences that can affect parents, family and the healthcare professionals involved. Several risk factors have been associated with an increased risk of stillbirth: including maternal medical factors, maternal characteristics, fetal factors, sociodemographic factors and behavioral factors. The aim of this work is to review the literature on risk factors that have a behavioral component. The main behaviors modulating the risk of stillbirth that have been more widely studied in the literature include use of substances (smoking, alcohol, illicit drugs and medical drugs), weight management, attendance at antenatal care and sleeping position. There is evidence in the literature that supports that all those behaviors have an impact on the risk of stillbirth, especially in the cases of smoking and drugs consumption during the pregnancy. Hence, more research is needed to establish interventions targeting these behaviors as preventive measures to reduce the risk of adverse obstetric outcomes