At DSUK, we work hard to ensure parents have the knowledge and access to the support that they need. It is estimated that around 10% of babies with Down syndrome are born with Hirschsprung’s disease or another Anorectal malformation (ARMs).  

Hirschsprung’s disease occurs when the nerve cells within a section of the bowel wall fail to develop, impacting the ability of the bowel to push the poo along – effectively causing a blockage. ARMs can include a range of problems when the opening to the bowel (anus or ‘bum hole’) fails to form correctly and is either absent or in the wrong place. These bowel conditions usually require surgical intervention, either soon after birth or at a later stage.  

Some infants may also require a stoma until a complete repair can be carried out. While all this may sound very daunting and some parents may be concerned about future bowel control, experience has shown that many affected babies can go on to be toilet trained at the same age as their typically developing peers.  However, since some children can have quite complex problems and will require several surgical procedures until the bowel is finally ‘sorted’, full bowel control could be delayed. 

If you are a parent to a child or young person with Down syndrome and Hirschsprung’s disease or another ARM, please join our closed group which provides information and support to both parents and professionals, particularly around toilet training.

Join our Hirschsprung's Facebook group