Hirschsprung's Disease
Around one in 10 babies with Down syndrome are born with Hirschsprung’s disease or another anorectal malformation (ARM). If your child has this diagnosis, you probably have a lot of questions. We’re here to help, with clear information, real stories from families who’ve been there, and connections to specialist support.
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Hirschsprung’s disease occurs when nerve cells in a section of the bowel wall fail to develop. This affects the bowel’s ability to push poo along, effectively causing a blockage.
ARMs cover a range of conditions where the opening to the bowel (the anus) fails to form correctly. It may be absent or in the wrong position.
Both conditions usually need surgery, either soon after birth or at a later stage. Some babies also need a stoma – a small opening in the tummy wall – while waiting for a full repair to be carried out.
Will my child be able to toilet train?
This is one of the questions parents ask most. Many children with Hirschsprung’s disease or an ARM do go on to toilet train at a similar age to their peers. Where surgery has been more complex or involved several procedures, it may take a little longer – but it is still very much achievable.
Our toilet training support is designed with children like yours in mind. We have a specialist bootcamp and community groups that can help when the time is right.
Lived experience
Reading about other families’ journeys can make a real difference when you’re going through your own. Our lived experience booklet brings together stories from parents of children with Down syndrome who have Hirschsprung’s disease or an ARM. It’s honest, warm, and full of practical insight from people who understand.
Get support
If you’re finding it hard to make progress with toilet training, our four-week online Bootcamp with June Rogers MBE gives your family a personalised plan, direct expert support and a group of other families going through the same thing at the same time.