Child Care

​Children born with Anorectal Malformation (ARM) may face unique, lifelong challenges in achieving bowel continence. 

Even after surgery, many will need ongoing support with bowel function during childhood and, in some cases, into adulthood.

With the right guidance, treatment, and support, children with ARM can thrive, physically, socially, and emotionally.

 

Important: Passing a stool involuntary does not always mean incontinence. In many cases, it is caused by constipation and stool build-up, which can be effectively managed with the right bowel care plan.

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Bowel Control – How it works​

For a child to achieve bowel continence three parts of the bowel system must work together:

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• Sphincter Function - The anal muscles (sphincters) need to be intact and must tighten and relax when needed. These muscles help keep faeces / poo in until the child decides to go to the toilet.

• Sensation - The child must be able to feel when the rectum is full.

• The “urge to go” signal is important so they know when to use the toilet.

• Motility - The bowel must move faeces/ poo along effectively to allow complete emptying 

 

Your child may:

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• Have involuntary passing of stool.

• Experience incomplete bowel emptying.

• Develop constipation or overflow.

• Have sudden urgency or reduced sensation.

• Need assistance to have regular bowel movements.

 

Many children with ARM experience some degree of bowel control difficulty, particularly in the early years. This is a common and expected part of the recovery process.

 

The goal is to help your child feel socially continent, confident, and comfortable, particularly as they start school or spend time with friends. 

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Social continence is a term doctors use to describe having a plan that allows your child to feel secure and in control of their continence needs, so they can take part in everyday activities with confidence and without worry.

 

It is important to remember that soiling does not always mean true incontinence. Often it is the result of faecal impaction caused by constipation. In this situation, hard faeces/pool block the rectum, allowing softer stool to leak around it, a condition that can easily be mistaken for diarrhoea. Understanding this can help guide the right treatment and prevent unnecessary worry.

 

Helping your child stay socially continent and comfortable

 

Bowel management supports confidence and independence by allowing the child to:

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• Stay socially continent and odour-free.

• Attend school without fear of embarrassment.

• Play and participate in activities without worry of “accidents”.

• Your child’s  healthcare team should help you create a personalised bowel care plan. 

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Dietary adjustments

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• High-fibre foods may be advised. 

• Encourage fluid intake. 

• Introduce new foods gradually to monitor intolerance or discomfort.

 

Medications

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• Stimulants and/or stool softeners may be prescribed to help keep stools soft and easy to pass. 

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While these can be very effective, there are a few things to keep in mind:

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• Stool softeners may sometimes cause leakage because the faeces/poo becomes too soft to control. 

• Stimulants can be unpredictable, their effect can vary depending on diet, lifestyle, and each child’s individual response.

• Some children are stimulant intolerant, often because of tummy cramping or discomfort, caused by the dosage being too high.

• If a combination of laxatives and dietary fibre does not achieve the desired results, your child’s care team can help you explore alternative methods to manage bowel function effectively and comfortably.

Bowel Emptying

If your child has difficulty fully emptying their bowel suppositories, enemas, or bowel washouts (rectal irrigation) may be recommended. These methods may help prevent constipation, leakage, and discomfort. As children grow, many can learn to self-administer enemas using washout devices. Bowel care plans are adjusted over time to fit their lifestyle, increasing independence while ensuring effective management. Solution volumes and schedules may change depending on diet, activity level, and other individual factors. Your child’s surgeon or specialist nurse can fine-tune the enema or washout routine to meet their specific needs.

 

Toilet Training

• For children with ARM, toilet training can take longer and may follow a different path than for their peers. 

• That’s okay, patience and understanding are key.

• Establish a regular toileting schedule to help build predictable bowel habits.

• Patience, not pressure, every child develops at their own pace.

• Watch for readiness signs such as awareness of needing to poo.

• Encourage routine bathroom habits, such as sitting on the potty or toilet 20-30 minutes after meals. 

• Be prepared for occasional involuntary leakage, keep a change of clothes and supplies handy for school or outings.

• Track any symptoms such as constipation, diarrhoea, or leakage, and share updates with your child’s care team. 

• Use positive reinforcement to celebrate compliance and successes. 

• Work closely with your child’s healthcare team for personalised guidance that supports their unique needs.

Important: Avoid blame or shame if accidents happen.

Managing Skin Care

Frequent stooling or leaks can sometimes lead to skin irritation and discomfort including itching, redness, or even skin breakdown

You can protect your child’s skin by:

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• Using barrier creams and gentle, fragrance‑free wipes.

• Keeping the area clean and dry to reduce irritation.

• Asking your healthcare team for recommendations on products that work well for sensitive skin.

• Teaching older children how to care for their skin as they gain more independence.

 

Emotional and Social Well-Being

Living with ARM can be emotionally challenging for children, especially if they feel “different” from their friends or have accidents. Children may:

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• Fear embarrassment because of accidents.

• Need help in the toilet.

• They may use a bowel program. 

• Be teased, bullied.

• They may feel isolated.

 

How to Help Your Child

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• Talk openly about your child’s condition in ways they can understand, helping reduce anxiety or embarrassment.

• ​​Reassure your child that their condition doesn’t define who they are.

• ​​Encourage them to share their feelings without shame or fear.

• ​​Support them in building confidence and self‑advocacy skills.

• ​​Involve them in their own care as they grow and become more independent.

• ​​Prepare them for everyday situations like school and playdates, where toileting needs might come up.

• ​​Remind them that many children have medical needs, and there is nothing to be ashamed of.

• ​​Connect with other families and support groups for shared experiences and encouragement.​​

• ​​Consider the support of child psychologists or counselors if your child feels anxious about school, toileting, or social situations.

School Life​

Children with ARM may need extra support, especially if they’re managing a bowel program or worried about accidents. 

With preparation, many children feel safe and confident in school environments.

 

Challenges might include:

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• Fear of having an accident at school

• Worry about being teased

• Needing to leave class for toileting routines

• Needing privacy for toilet routines.

 

Tips for working with schools

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• Meet with teachers and school staff early to explain your child’s needs. 

• Collaborate with school staff to ensure your child has privacy and appropriate support.

• Create a school care plan to clearly communicate your child’s requirements.

• Arrange for a trained staff member to assist your child if needed.

• Help your child feel comfortable using school bathrooms and ensure privacy is available.

• Ask the school nurse or staff to assist with bowel routines when necessary.

• Provide extra clothes, wipes, and supplies for emergencies.

• Encourage your child to speak up if they need help or support.

• Plan ahead for trips, sleepovers, and school activities so your child feels included and confident.

Growing Up: Independence and Self-Confidence

As your child matures, encourage them to take increasing responsibility in managing their condition. 

 

With your guidance, understanding, and encouragement, young people with ARM can develop the confidence and skills they need to take ownership of their care, becoming empowered, resilient, and ready to thrive. 

 

You can help your child build confidence and self‑management skills by giving them age‑appropriate responsibilities.

 

Learning and following their bowel routine, gradually taking over the steps with your support.

Managing medication or dietary needs, including remembering doses, preparing drinks, or choosing suitable foods.

Speaking up for themselves by communicating clearly and confidently. 

 

Practice with them how to explain their condition and care needs to trusted adults.

Celebrating milestones like accident-free days and successful self-care, reinforcing their progress and independence.

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Monitoring and Reassessment

Regular follow-ups are essential to:

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• Adjust bowel management plans as your child grows and transitions into adult healthcare services.

• Address any episodes of soiling or other bowel challenges promptly.

• Evaluate changes in health, diet, activity, or medications that may affect bowel function

• Ensure your child has access to medical records and diagnostic results to stay informed and involved in care decisions.

 

Supporting Yourself and Your Child​

Caring for a child with Anorectal Malformation can be an intense journey physically, emotionally, and mentally. 

 

It often involves ongoing medical care, surgeries, bowel management programs, and advocating for your child at healthcare appointments and school. 

 

It’s completely okay to ask for help and to prioritise your own self-care. 

 

When you care for yourself, you are also caring for your child. 

 

Parenting a child with ARM is a marathon, not a sprint. 

Seek connection and support

Reach out to support groups or peer mentors for yourself and your child. 

Sharing experiences with others who understand can reduce feelings of isolation and help you both build stronger coping skills.

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Collaborate with schools

Work closely with your child’s school to create a discreet care plan that manages any accidents sensitively while ensuring your child can take part fully in all school activities.

Work closely with your child’s school to create a discreet care plan that manages any accidents sensitively while ensuring your child can take part fully in all school activities. 

If needed, you can ask your nursing team to speak to the school to help explain the condition and suggest appropriate strategies.

Empower your child

Respect your child’s dignity and involve them in care decisions whenever possible. Encourage them to express their preferences and take age-appropriate responsibility, this helps build confidence, understanding, and self-worth.

 

Build Your Knowledge & Skills

• Learn about your child’s condition, treatment options, and long-term healthcare needs.

• Keep organised medical records; surgical reports, test results, and specialist notes

• Don’t hesitate to ask questions or seek second opinions. 

• You are your child’s most consistent advocate.

• Make time for your wellbeing. 

• Even short moments for yourself each day can help recharge your energy. 

 

Accept help

Reach out to family, friends, or professionals when you need support. 

This may be for practical help or emotional support when you need someone to listen. 

You don’t have to do everything on your own.

Connect with others

Join support groups (online or in person) for parents of children with Anorectal Malformation. Talking to other parents who understand can bring relief and reassurance. 

Learn about disability rights in your region to ensure school accommodations, if needed. Support groups and online communities can be a safe place to share.
Sharing experiences, tips, and encouragement can help you feel less alone.

 

Nurture your body

Eat when you can, rest when you can, get regular exercise.

Your physical health is directly linked to your emotional resilience.

Be gentle with yourself

Explore relaxation techniques like mindfulness, breathing exercises, or gentle yoga. 

Even a few deep breaths in a stressful moment can help you regain calm. 

You’re doing your best, and that is enough. 

Some days will be hard, and that’s okay.

 

Give yourself permission

Feeling anxious, sad, frustrated are normal. 

Remind yourself: You are doing an extraordinary job in extraordinary circumstances.​

 

Adolescence and Transition to Adult Healthcare

As your child enters adolescence, their healthcare team will begin discussions about transitioning from paediatric to adult healthcare services. 

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This process ensures that they continue to receive the support they need for bowel management, as well as emotional and social well being during this important stage of life.

 

Adolescence brings new experiences like forming friendships, navigating body image concerns, and exploring romantic relationships. 

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These are natural parts of growing up, and young people with ARM have the same hopes, needs, and potential as their peers.

 

Puberty can introduce new challenges in managing bowel care. 

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Teenagers may sometimes disengage from their routine due to social or emotional distractions, which can lead to lapses in care.

 

Education, peer support, and understanding that setbacks are normal can help young people during this time. 

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Most teenagers eventually return to their bowel care routines as they recognise how important cleanliness is for social acceptance, self-confidence, and overall wellbeing. 

 

Further information please see sections: 

Teenagers: Supporting Teenagers. Teenage Boys. Teenage Girls