Neonatal diagnosis of Down syndrome in the Netherlands: suspicion and communication with parents

Abstract

DS is still often diagnosed after birth, usually on the first day of postnatal life. Most identified clinical features were upslanted palpebral fissures, epicanthic folds and hypotonia. Special attention for recognition of all present clinical features is needed for early diagnosis. Appropriate communication with the parents of the message that their child has DS can be difficult. Guidelines can help to make counselling easier and more effective, which in turn may increase parental satisfaction. Not all recommendations for the first conversation with parents were fully implemented in Dutch clinical practice.

The first year: the support needs of parents caring for a child with an intellectual disability

“…, Groot‐van der Mooren et al . ). Many parents report negative experiences associated with poor interactions with health professionals, insensitive or indifferent communication, inconsistent referral to counselling services and inadequate counselling at the time of a child's diagnosis (Poehlmann et al .…”

“…Emotional support is crucial for parental adjustment and can be facilitated by affirming interactions with health professionals and the way they communicate with parents (Poehlmann et al 2005, Skotko 2005, Skotko & Bedia 2005, Lalvani 2008, Muggli et al 2009, Groot-van der Mooren et al 2014. Many parents report negative experiences associated with poor interactions with health professionals, insensitive or indifferent communication, inconsistent referral to counselling services and inadequate Why is this research or review needed?…”

The need to know: The information needs of parents of infants with an intellectual disability—a qualitative study

“…As well as offering psychosocial support, supportive peers were able to draw on their own experiences to provide timely advice to new parents, which filled a gap when information was not forthcoming from health professionals. While some research has highlighted the importance of health professionals providing parents with contact information for peer support networks (Groot‐van der Mooren et al., ; Muggli, Collins, & Marraffa, ; Pillay et al., ; Skotko & Bedia, ), the findings from this study elucidate the significant role of these peers in assisting parents to navigate the health and disability service environment.…”

Congenital Visceral Malformations in Children with Down Syndrome (DS) Followed in the Pediatric Unit of the CNHU, Cotonou, Bénin

“…This age at diagnosis is quite late compared to the ages that were reported from countries with advanced medical technologies. Indeed, in these countries, the diagnosis is usually done within the very first month of life [11]. In a previous survey in 2015 at the same place, the mean age of children at diagnosis of DS was 30 months.…”