Mothers left in the dark over NG tube feeding decisions | Down Syndrome UK

A new study published in the International Journal of Developmental Disabilities has highlighted the emotional toll faced by mothers of young children with Down syndrome who require nasogastric (NG) tube feeding.

The research, led by Dr Laura K. Hielscher who completed her PhD at the Department of Psychology, Sport and Geography, University of Hertfordshire and co-authored by Nicola Enoch, CEO of Down Syndrome UK (DSUK), found that mothers often felt excluded from decision-making when NG tubes were first inserted and were not given sufficient information about the risks, challenges, or alternatives. Many reported grief at being unable to breastfeed as planned, and a sense of loss when feeding choices were made without their involvement.

NG tube feeding can often be used to support babies with Down syndrome in advance of heart surgery, or for those who may experience feeding difficulties or have medical complications. While NG tubes can be life-saving, the study revealed that prolonged use without proper planning can lead to feeding tube dependency, oral aversions, and delayed eating development. Mothers described struggling with the practical demands of NG feeding, the distress of repeated tube insertions, and the constant fear of their child pulling the tube out.

The lack of structured “exit planning” – clear pathways to support children in transitioning back to oral feeding – was a recurring frustration. Without professional guidance, some families felt forced to seek expensive overseas weaning programmes. Mothers also said they had to advocate for themselves and their children in an inconsistent system that often failed to provide Down syndrome-specific expertise.

The study calls for:

• Specialist breastfeeding support tailored to children with Down syndrome, including those initially fed via NG tubes.
• Clear, structured NG tube exit plans, with timelines and goals, to reduce anxiety and prevent long-term tube dependency.
• Better information and support for parents, covering not only the practicalities of tube feeding but also the emotional and social impacts.

Laura K. Hielscher and Silvana Mengoni from the University of Hertfordshire said:

“Feeding tubes can be lifesaving, but for many families of children with Down syndrome the journey is incredibly tough. Parents in our study described how NG tube feeding affected not just their child’s development, but their own wellbeing and everyday family life. It is vital that families are given ongoing support and clear plans for moving on from tube feeding when the time is right, rather than being left to cope alone or struggle to find help.”

Nicola Enoch, CEO of DSUK said:

“The research underlines the urgent need for healthcare services to recognise parents as partners in feeding decisions, to provide timely specialist support, and to acknowledge the emotional challenges parents face during what can be a deeply distressing and isolating experience.”