My baby needs a stoma

Most stomas in babies are formed shortly after birth. It can be distressing at first to realise that your little one has a condition which will require surgery and a stoma. However, rest assured that your medical team has helped people through this before and this surgery will give your child a better chance to experience a full, active and happy life. Stomas are often created to relieve painful and uncomfortable symptoms.

Fortunately, most stomas in babies are temporary. Even if your baby does need a stoma for longer than you had hoped, as an older child they will consider their stoma to be completely normal, having grown up with it from an early age.

Why does my child need a stoma?

Whether the stoma is to be formed as a baby or as an older child, there may be many medical reasons why your child’s doctor has recommended that he/she needs one. These can include:

Imperforate anusThe opening to the anus is missing or blocked. This means that there is no exit for the bowel or its contents
Hirschsprung’s diseaseNerves that make the bowel work are missing. The bowel muscles are unable to push waste material through the bowel causing a blockage and a swollen abdomen
Inflammatory bowel diseaseIncludes Crohn’s disease and Ulcerative Colitis, where areas of the gut become inflamed causing damage, obstructions or leakages
Neonatal necrotising enterocolitisMost common in low birth weight or premature babies. For unknown reasons, parts of the bowel start to die
Bladder exstrophyThe bladder and genitalia are not properly formed
Cloacal exstrophyThe large bowel, bladder and genitalia are not properly formed
Eagle-Barrett SyndromeUrinary problems and the absence of stomach muscle

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Your child is not alone - and neither are you

It is important to remember that you and your child are not alone. There are approximately 102,000 people in the United Kingdom with a stoma, and around 21,000 new ones are formed every year.

Dealing with your child’s stoma may be challenging at first but don’t worry − it will soon become part of your daily routine and there is a lot of support available. As a first step, take a look at our advice about taking care of your child's stoma.

Your Stoma Care Nurse will be able to answer any questions you have and show you where to find more information if you need it.

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