Mothers left in the dark over tube feeding decisions for children with Down syndrome, research reveals

A new study led by the University of Hertfordshire has highlighted the emotional toll faced by mothers of young children with Down syndrome who require tube feeding. The research, led by Dr. Laura K Hielscher, who completed her Ph.D. at Herts’ Department of Psychology, Sport and Geography, found that mothers often felt excluded from decision-making when nasogastric (NG) tubes—soft plastic tubes inserted through a baby’s nose and into the stomach—were first inserted to provide essential nutrition and medication.

The findings, published in the International Journal of Developmental Disabilities, revealed many mothers reported not being given sufficient information about the risks, challenges, or alternatives to NG tube feeding.

They also spoke about 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 lifesaving, 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 programs.

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.

Dr. Hielscher 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 well-being 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.”

Study co-author Nicola Enoch, CEO of DSUK said, “The research underlines the urgent need for health care services to recognize 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.”