Understanding Trisomy 18 Parent Experiences

OBJECTIVE: The objective of the study is to evaluate the general population's knowledge of fatal fetal anomaly (FFA). METHODS: Descriptive statistics were utilised to describe the data. Chi-square tests assessed associations with knowledge of FFA, termination of pregnancy (TOP) for FFA, and perinatal palliative care (PPC). RESULTS: Nine hundred seventy adults of the Irish population selected by random digit dialling with 83.9% (n = 814) agreed to partake...

BACKGROUND: Research indicates perinatal loss is associated with anxiety, depression and stress in women and partners during subsequent pregnancies. However, there are no robust estimates of anxiety, depression and stress for this group. We meta-analytically estimated rates of anxiety, depression and stress in pregnant women and their partners during pregnancies after previous perinatal loss. METHODS: Databases (Medline, PsychInfo, Embase, Cinahl Plus) and grey literature were searched from 1995 through to May 2016...

Families that choose to continue a pregnancy with a prenatal diagnosis of Trisomy 13/18 are a minority that present unique challenges for those in charge of their care. This study investigated the extent to which these patients felt supported by their healthcare providers, and any differences in the perceived level of support experienced by those working with a physician versus those working with a genetic counselor. Two online support groups, SOFT and Hope for Trisomy, distributed an online survey to their members...

BACKGROUND: Parents who experience a perinatal loss often leave the hospital with empty arms and no tangible mementos to validate the parenting experience. Opportunities to create parenting experiences with transitional objects exist following the infant's death. PURPOSE: This article offers suggestions for staff in units where infant loss is possible to best assist parents in optimal grieving through the offering of transitional bereavement objects. METHODS/SEARCH STRATEGY: CINAHL Complete, MEDLINE, and the Cochrane Database of Systematic Reviews were searched using the following key words-perinatal bereavement, grief, perinatal loss, transitional objects, bereavement photography-and the search was limited to 5 years and the English language...

AIMS AND OBJECTIVES: To explore couples' perceptions of the effects of perinatal loss on their marital relationship, social support and grief 1 year postloss, and analyse what factors changed the severity of their grief. BACKGROUND: Perinatal losses are traumatic events in the lives of families and can have serious long-term consequences for the psychological health of parents and any subsequent children. DESIGN: A prospective follow-up study...

The loss of a close friend or relative is always an ordeal. When this loved one is a baby, born or even unborn, a number of specific aspects have been reported by parents and researchers. The specificities of perinatal mourning have been progressively recognized since the 1970s, with increasing literature on this topic. Its complexity should be acknowledged by healthcare professionals who cope with perinatal loss, to allow them to offer adapted familial support. This paper is written by a mother, a founding member of a French nonprofit organization supporting parents in case of a prenatal or postnatal life-limiting disorder (Association SPAMA, soins palliatifs et accompagnement en maternité) with an internet support forum and a neonatologist involved in research with parents after the loss of their baby...

Healthcare professionals' psychological involvement in perinatal loss is a largely overlooked subject by healthcare systems, scientific research and prevention policies. A systematic scientific review has been carried out about emotional experiences, attributed meanings and needs conveyed by healthcare professionals in relation to perinatal loss. We identified 213 studies between 1985 and 2015, 20 of which were included in the present study for qualitative analysis. Our results point out the need for a targeted vocational training in perinatal loss, enabling healthcare professionals to achieve a proper management of their own internal states...

Trisomy 13 and 18 (T 13/18) are rare chromosomal abnormalities associated with high morbidity and mortality. Improved survival rates and increased prevalence of aggressive medical intervention have resulted in families and physicians holding different perspectives regarding the appropriate management of children with T 13/18. Families were invited for open-ended interviews regarding their experiences with the medical care of a child with T 13/18 over the past 5 years. Seven of 33 invited families were surveyed; those who had spent more than 40 days in the hospital were most likely to accept the invitation (OR 8...

Parents whose child is diagnosed with a serious disease such as trisomy 18 first rely on the medical community for an accurate description and prognosis. In the case of trisomy 18, however, many families are told the disease is "incompatible with life" even though some children with the condition live for several years. This paper considers parents' response to current medical discourse concerning trisomy 18 by examining blogs written by the parents of those diagnosed. Using interpretive humanistic reading and foregrounding Cathryn Molloy's recuperative ethos theory (2015), we find that parents demonstrate recuperative ethos in response to physicians' descriptions of trisomy 18, particularly in rhetoric addressing survival, medicalized language, and religious and/or spiritual rhetoric...

Support groups can help individuals cope with difficult health situations but have been understudied for women with perinatal bereavement. An early study suggested those using internet support groups had high rates of positive depression screens, raising the question whether these users were more symptomatic than those in similar face-to-face support groups. We therefore conducted two convenience sample surveys of women bereaved by perinatal loss, one looking at use of online support groups and the other in-person support groups...

The trisomy 13 and trisomy 18 syndromes are important and relatively common chromosome conditions each consisting of a recognizable pattern of multiple congenital anomalies, an increased neonatal and infant mortality, and a marked cognitive and motor disability in older children. Because of the medically serious nature of the outcomes, the traditional approach to management in the newborn and early infancy periods has been to withhold technological support and surgery. In the last decade a rich dialogue has emerged in the literature; one view makes the case for pure comfort care for the benefit of the child while the other view supports full intervention in appropriate situations...

Trisomy 13 and 18 are life-limiting conditions for which a palliative approach is frequently recommended. The objective of this study was to examine parental goals/decisions, the length of life of their child and factors associated with survival. Parents of children who lived with trisomy 13 or 18 that were part of English-speaking social networks were invited to participate in a questionnaire study. Participants answered questions about their hopes/goals, decisions regarding neonatal interventions, and the duration of their children's lives...

The medical management of infants with the trisomy 13 and trisomy 18 syndromes is challenging and controversial. Both conditions have high neonatal and infant mortality, and surviving children display significant cognitive and motor disabilities. Currently, there exists a tension in the neonatal and perinatal communities regarding care. One view holds that management should consist solely of comfort care, while another opinion recommends offering medical and surgical intervention in appropriate situations. The purpose of this manuscript is to present a model for the care of fetuses and infants with trisomy 13 and 18 during the prenatal, perinatal, and postnatal periods...

BACKGROUND: While infants with trisomy 13 (T13) and trisomy 18 (T18) are known to die early, parents want to know more about life expectancy and quality of life. METHODS: 30-year single-center retrospective chart analysis (1980-2010) of cytogenetically confirmed T13 and T18 cases. Mothers of infants who had lived 3 months or longer were approached to judge their infant's quality of life and talk about their experiences with medical staff. RESULTS: Data of 18/20 T13 infants and 18/21 T18 infants could be retrieved...

Neonatal nurses regularly face complex legal and ethical dilemmas. This article discusses the hypothetical case of Jack, a two-day-old infant, born at 39 weeks' gestation, and diagnosed with trisomy 13 (syndrome), a life-limiting condition and being cared for in a neonatal intensive care unit. Jack's prognosis is poor and he is not expected to live past two weeks of age.

INTRODUCTION: Our goal was to prospectively compare the trajectories of depression symptoms through pregnancy and postpartum between women who received normal prenatal screening results and those whose results indicated an increased risk for fetal aneuploidy. MATERIAL AND METHODS: Women completed the Edinburgh Postnatal Depression Scale (EPDS) at 4-week intervals between <26 weeks' gestation and 3 months postpartum. We categorized women into four groups: (i) negative serum screening and ultrasound results (SS(-) /US(-) , n = 103), (ii) positive serum screening/negative ultrasound results (SS(+) /US(-) , n = 42), (iii) negative serum screening/positive ultrasound results (SS(-) /US(+) , n = 19), or (iv) positive serum screening and ultrasound results (SS(+) /US(+) , n = 13), and compared EPDS scores between groups using Poisson regression...

The purpose of this study was to examine the relationship between maternal grieving for perinatal loss (PL) and the perception of and attachment to children born subsequent to a recent PL among mothers in Jordan. A cross-sectional, descriptive correlational design was used. A convenience sample of 190 mothers of full-term, healthy newborns born subsequent to a recent PL was recruited from seven Maternal and Child Health Care Centers in Jordan. These mothers were assessed using the Perinatal Grief Scale (L.J...

There is an abundance of information in the literature on patient experiences with Internet support groups (ISGs). However, studies exploring these experiences in a rare disease population are scarce, even though these families are often at a disadvantage for resources, reliable information, and support. The aim of the current study was to explore the experiences with ISGs for parents of children with Cornelia de Lange syndrome (CdLS), a rare genetic diagnosis, in order to better understand the impact on emotional support and their child's medical care...

INTRODUCTION & PURPOSE: Perinatal loss is one of the toughest events of life. Physiological milk secretion after perinatal loss adds to complicacy of the hardships of the event. The present study is aimed at exploring women's experience with breast problems and milk leakage after perinatal loss. METHODS: The Study was carried out through explorative quality approach with 18 participants. Sampling method was purposeful and selecting the participants from widest variety was ensured...

SIGNIFICANCE: Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological and developmental processes are altered. METHODS: This longitudinal phenomenological study of 16 mothers and 14 fathers/partners sought to learn the experiences and developmental needs of parents who continue their pregnancy despite the lethal diagnosis...