Antenatal counselling for prospective parents whose fetus has a neurological anomaly: part 1, experiences and recommendations for service design

Abstract

Prospective parents whose fetus is diagnosed with a neurological anomaly go through a complex range of emotions. They describe their discussions of antenatal counselling from health care professionals as focusing too much on the nature of the anomaly involving unintelligible medical terminology, when what they really want is a picture of the best-and worst-case scenarios. Whilst information on the level of risk for their fetus is important, it is not the parents' primary concern. When statistics for risk are given, they may not be as well understood as the health care professionals think. This review discusses the published evidence on antenatal counselling and recommendations for explaining risk to parents of fetuses with neurological anomalies. From this data we make recommendations for the organization of antenatal counselling services.

Antenatal counselling families whose fetus has a neurological anomaly: one parent’s reflections

“…I whole-heartedly support the recommendations set out by Hart et al 1,2 and would like to offer these comments.…”

Fetal Neurology: From Prenatal Counseling to Postnatal Follow-Up

“…Before meeting the parents, the specialists involved in the consultation need to review, collegially, all of the information, imaging, and anamnestic data [ 3 ]. This moment is essential to tailor the counseling, especially when the CNS abnormalities are minor or subtle and the long-term outcome is uncertain [ 26 ].…”

“…Considering the complex and fragile maternal–fetal dyad, a high level of training and experience is necessary. Fetal counseling is a multidisciplinary discipline [ 3 ]. It typically cannot be performed by only one specialist, and it requires the presence of a team of experts, including the referring obstetrician, the neuroradiologist, the child neurologist, the geneticist, the psychologist, and other pediatric subspecialists in case of extra-central nervous system (CNS) anomalies.…”

Antenatal counselling for prospective parents whose fetus has a neurological anomaly: part 2, risks of adverse outcome in common anomalies

“…Once a fetal neurological anomaly has been diagnosed by ultrasound or in utero magnetic resonance imaging (MRI), prospective parents want to understand the aetiology and likely developmental outcome. Part 1 of our review discussed prospective parents’ views on antenatal counselling and recommendations for how services should be designed and risks communicated 1 . To ensure prospective parents receive appropriate advice and support, a multidisciplinary team should be involved in the diagnosis and discussion of the likely outcome.…”

“…Part 1 of our review discussed prospective parents' views on antenatal counselling and recommendations for how services should be designed and risks communicated. 1 To ensure prospective parents receive appropriate advice and support, a multidisciplinary team should be involved in the diagnosis and discussion of the likely outcome. The most appropriate professionals should then provide counselling in easy-to-understand language, discussing management options for the pregnancy, as well as postnatal interventions and follow-up.…”