Psychological Impact of a Prenatal Diagnosis of Congenital Heart Disease The diagnosis of fetal CHD is often devastating for parents While reeling with grief for the loss of the healthy child they expected, parents must quickly learn medical terminology to understand the diagnosis and its potential impact on the child and family Feelings of anger, shock, disbelief, fear, and guilt are common and have a major impact on parents’ ability to absorb information For many, there is a sense of a loss of control and a fear of the unknown The process of undergoing fetal echocardiography, in and of itself, is associated with parental stress and anxiety, and for some women, depression, especially when the result is abnormal.3,4 In a minority of women, a prenatal diagnosis of CHD has an opposite effect, resulting in improved bonding and reduced anxiety.3 Mothers and fathers respond differently to receiving a diagnosis of fetal CHD, with mothers experiencing significantly higher levels of stress and depression than fathers.5 Affected fathers are less anxious and more optimistic than those receiving a postnatal diagnosis.6,7 Mothers, however, are more likely to suffer a detrimental effect of a prenatal diagnosis—with high proportions of mothers having clinically significant levels of depression (22%), anxiety (31%), and traumatic stress (39%).8 This may be in part due to the mother's constant awareness of the pregnancy with her body's physiologic changes, the fetal movements, and constant comments and questions from well-meaning family, friends, and strangers about the pregnancy Mothers may also be questioned about “what they did” to cause the heart condition, or feel inappropriate guilt for not having a healthy child These psychological complications of a prenatal diagnosis tend to persist through the pregnancy and beyond and may also impair bonding between mother and baby, perhaps due to fears of attaching to a child who may not survive.9,10 A fetal CHD diagnosis also has an impact on the couple's relationship, with higher levels of partner dissatisfaction among affected women compared to couples carrying a healthy fetus.8 The diagnosis of a severe fetal abnormality and the decisions that need to be made as a result often prompt couples to take on parenting functions and begin the process of coparenting an earlier stage than usual.11 These early experiences of decision making, information gathering and sharing, and provision of emotional support for each other, set the scene for how coparenting takes place after birth.11 Despite the significant emotional impact, parents are generally grateful for a prenatal diagnosis.9 Prenatal diagnosis of CHD affords opportunities for parental education regarding the diagnosis and likely outcome, options for pregnancy termination, planning for optimum timing and location of delivery, and the chance to make preparations for work and childcare after delivery Affected couples have a better understanding of their newborn's heart condition than those who receive a postnatal diagnosis prior to neonatal discharge.12 While overall, a prenatal diagnosis can be associated with worse outcomes than postnatal diagnosis (due to more severe disease, and associated extracardiac anomalies in the prenatal group), prenatal diagnosis has been shown, for selected conditions, to reduce mortality and morbidity with optimized perinatal and neonatal management.13–17 Further study is required to identify factors that can reduce the detrimental effects of a prenatal CHD diagnosis on maternal psychological well-being, which can have important physiologic impacts on the developing fetus; however, we have identified some practical ways to mitigate the stress couples experience.18 What Information Do Parents Want? Accurate Information on the Diagnosis and Treatments Prenatal support of the mother and family begins with provision of accurate information about the diagnosis and communication of all the treatment options available, including those offered at other hospitals Knowledge of the content of counseling that pregnant mothers and their partners find most useful is important in planning the discussion Parents and physicians differ in their opinions of what is deemed important information to communicate at prenatal diagnosis and parents often want more information than physicians provide.19 Of high importance is accurate information on the diagnosis and surgical outcomes at different hospitals, which can vary dramatically.20–22 Parents are highly dependent on physicians for providing data, as most are not publicly available Only the United Kingdom publishes surgical outcomes for all pediatric heart surgical centers throughout the region.23 In the United States, the Society for Thoracic Surgeons is now publishing limited outcomes data, based upon information voluntarily provided by some pediatric surgical centers.24 Parents overwhelmingly want to be given appropriate hope, not to feel pressured in their decision making, and to seek opportunities to interact with other families that have been through similar experiences.19,25–27 Many parents want to receive information in writing and through diagrams, both to enhance their understanding, and provide a reference for themselves and for family and friends.26 (See Table 12.1 for selected quotes from parents.) Table 12.1 Parents' Perspectives of Prenatal Counseling Issue Inaccurate information Information limited to diagnosing or local Selected Quotes From Parents25,26 I was told that my child had only a 10% chance of survival to 6 months of age and that life expectancy for someone with single-ventricle anatomy was no more than a couple of years It would also have been helpful to receive stats on the best hospitals and surgeons in the country for my son's particular heart defect Parents should know they have options It shouldn't be a given that you automatically go to the closest hospital/surgeon just because of proximity Parents need to be given information, choices, and some control over their child's care ... providing data, as most are not publicly available Only the United Kingdom publishes surgical outcomes for all pediatric heart surgical centers throughout the region.23 In the United States, the Society for Thoracic Surgeons is now... region.23 In the United States, the Society for Thoracic Surgeons is now publishing limited outcomes data, based upon information voluntarily provided by some pediatric surgical centers.24 Parents overwhelmingly want to be given appropriate hope, not to feel