Growing up with a stoma: the key role of healthcare professionals in supporting children and their parents

For many parents, hearing the word stoma immediately raises concerns and questions. Yet in paediatrics, a stoma is often a temporary step in a child’s care pathway, designed to improve their health and quality of life. At the Children’s Hospital (HUDERF – H.U.B.), medical and nursing teams support families at every stage.

A medical solution that is sometimes necessary

A stoma is a surgically created opening between an internal organ and the skin. In the case of digestive stomas, part of the digestive tract is connected to the outside of the body.

In children, there are several situations in which a stoma may be required.

The first is what is known as a diverting stoma. This temporarily diverts stools outside the body to protect the bowel, for example following digestive surgery or in certain congenital abnormalities or intestinal diseases. The aim is to give the tissues time to heal.

The second situation concerns nutrition. Some children, particularly those with neurological conditions, swallowing difficulties or oral feeding disorders – where eating by mouth is refused or not possible – are unable to take in enough food orally. A gastrostomy – a small opening providing direct access to the stomach – or a jejunostomy – connected to the intestine – can then be used to provide the nutrition they need to grow.

Finally, some stomas can be used to administer bowel washouts to help with stool evacuation, particularly in children with severe constipation. A caecostomy can be used to perform these washouts and improve continence.

The major difference compared with adults? In children, these stomas are often temporary. They are a therapeutic tool that helps children through a particular stage of their care pathway, supports growth and improves their quality of life.

Addressing parents’ concerns

Being told that a child needs a stoma almost always raises concerns. Parents often imagine a major and lasting constraint: will their child be able to lead a normal life? Go to school? Travel? How long will the stoma be needed?

“Most of the time, these procedures are planned,” explains Dr Kotilea. “This gives us time to talk things through with the parents: to explain why the stoma is useful, what the procedure involves, and what the potential benefits and risks are.”

Families are shown the equipment, taught how to use it and given the opportunity to discuss all their questions and concerns: the operation, anaesthesia, care and possible complications.

Support is also tailored to the child’s age. For babies, parents learn how to provide the necessary care and become the main caregivers on a day-to-day basis. For school-age children, explanations often involve child-friendly resources such as illustrated books, soft toys or dolls fitted with a stoma to help them understand the different aspects of care. For adolescents, the focus is on fostering independence: they learn to manage their own equipment and care, sometimes with support from patient associations or young people who have been through a similar experience.

The key role of specialist nurses

Nursing teams are at the heart of this support. Their role goes far beyond teaching families how to care for a stoma.

They provide an essential link between hospital and home. Once the child returns home, they coordinate care with community nurses, answer families’ questions and guide them through practical matters, including choosing equipment, reimbursement procedures and obtaining supplies.

As with any medical device, difficulties can sometimes arise, such as skin irritation or problems with fitting the equipment correctly. Specialist nurses are there to support families in these situations and quickly find appropriate solutions.

Some teams have a dedicated telephone line, allowing parents to obtain advice quickly if they have any concerns or encounter a problem.

“The liaison nurses we work with are indispensable,” stresses Dr Kotilea. “They support families not only with the care itself, but also with all the administrative and organisational aspects, which takes a huge burden off parents.”

An almost normal daily life

At first, having a device attached to the body can seem daunting. Families are often afraid of doing something wrong or damaging the stoma.

Yet most everyday activities remain entirely possible.

Children can shower, bathe and swim, whether in a swimming pool or in the sea. Stoma appliances are designed to be waterproof and discreet under clothing. Hygiene is straightforward: water, soap and, if necessary, a few products to protect the skin.

With a diverting stoma, a small pouch collects the stools and needs to be changed when it is full. With a feeding stoma, a small external button allows a tube to be connected to administer milk or nutrients.

At school, arrangements are generally straightforward. Some children receive their feeds at home in the evening, while younger children may attend facilities or nurseries where trained staff are available.

Some contact sports may be discouraged or require additional protection, but overall, children can lead active lives.

Over time, families often become highly skilled in managing the stoma. “It is impressive to see how quickly they become experts,” says Dr Kotilea. “Sometimes they come up with tips and solutions that we later use to help other patients.”

Learning to say goodbye to the stoma

Paradoxically, when the stoma is no longer needed, its removal can also bring unexpected emotions.

Dr Kotilea recalls a child who had a gastrostomy inserted at a very young age because he was unable to eat by mouth. Several years later, once he was able to eat independently, the time had come to remove it. His parents were ready, but the child was not – an important factor to take into account in the care pathway.

For him, the stoma was part of his body. He had never known life without it: it was thanks to the gastrostomy that he had been able to receive nutrition throughout his childhood. With the support of a psychologist, the team took the time to talk to him, explain this new stage and prepare him for the change.

A few weeks later, the gastrostomy was removed. This time, the child was ready – and proud to take another step towards independence or, in his own words, “to become a big boy”.

A remarkable ability to adapt

Another adolescent had to live with a diverting stoma for two years following major emergency digestive surgery. At first, he felt discouraged and extremely weak. Gradually, with the support of the healthcare team, he began to regain his strength: nutritional support, returning to school and physical activity. His determination helped speed up his recovery.

When the stoma could finally be removed, the entire team was struck by how far he had come. “These journeys remind us that patients themselves also play an active role in their health,” concludes Dr Kotilea. “A stoma is a tool: it helps children get better, grow and return to an active life.”