Common health issues in children with spina bifida

Neurogenic bowel and bladder

It is common for children with spina bifida to have a neurogenic bladder – this means there is a problem with the messages from the brain to the parts of the body controlling urine and bowel movements.

A neurogenic bowel can make it difficult for your child to have regular bowel motions (poos). Some children become constipated and some experience leakage between bowel movements. Untreated constipation can cause leakage of stool (poo), can lead to blockages, and can make future constipation harder to manage.

Your child’s doctor will help with advice and a treatment plan for keeping your child’s bowel, bladder and kidneys healthy.

Bladder care at home

• If your child uses a catheter, make sure you understand how to use them properly. Help and education is available if you have questions about technique or feel something isn’t right. Clean hands and correct technique can reduce the chance of your child developing an infection.
• Around the age of two, many children start to show an interest in using the toilet. When this happens, you should encourage your child to take time to sit on the toilet regularly, even if your child uses catheters.
• When going out, make sure you have enough supplies like catheters, pads or nappies, and a change of clothes in case of accidents.

When to see a doctor

• Urinary tract infections are common in children with spina bifida. If your child has unexplained fevers, vomiting, irritability, decreased feeding or tummy pain, or their urine looks or smells different than usual, contact your GP or your child's spinal disabilities care team right away.
• If you notice a change with your child’s normal patterns, for example leaking between catheters when they previously did not leak, speak to your GP or the spinal disabilities team.

If you are eligible for the National Disability Insurance Scheme (NDIS), you can request a continence nurse assessment each year as part of your child’s package of care. This way you can ensure your child’s continence needs are reviewed regularly and you are up to date with the latest continence products available.

Bowel care at home

• Many infants will have a change in their poos when they have a change in their diet. For example, when they switch from breastmilk to formula or begin eating family foods for the first time. Infants sometimes benefit from leg cycling or gentle tummy massage to help them pass a bowel motion.
• When your child is old enough for more solid foods, a healthy diet, including fruit, vegetables and whole grains is important for your child’s overall health and growth, as well as the health of their bowels. Offering these foods to your child at every meal will encourage them to eat a healthy diet.
• Offering water regularly throughout the day and with meals is also important.
• Around the age of two, many children start to show an interest in using the toilet. When this happens, you should encourage your child to take time to sit on the toilet regularly, especially after they eat.
• If your doctor has recommended you use enemas, bulking fibre agents, or wash outs, make sure you understand the instructions. Your Spinal Disabilities team can help if you don’t understand. Make sure you continue your child’s bowel routine regularly and as instructed.
• When your child starts school, your spinal disabilities team can help you make a plan for managing toileting at school.

When to seek help

Speak to your child’s GP or spinal disabilities care team if:

• your child’s tummy is more bloated than normal,
• your child is leaking poo and they were not before, or
• you are having trouble managing their bowel routine.

Pain and movement

Your child may experience headaches, leg or back pain, or be more tired than usual from time to time. This can be a normal part of childhood, but in some cases, it can be a sign of an underlying problem.

Your child’s doctors and physiotherapists will be on the lookout for signs of serious problems that can develop for children with spina bifida such as spinal tethering and raised intracranial pressure. Tethering is when the nerves in the spine are stretched in a way that causes them to become damaged. Raised intracranial pressure means that the fluid surrounding your child’s brain is not draining correctly, causing too much to build up in your child’s head.

Care at home

Play with your baby or child and help them find activities they enjoy. Speak to your physiotherapist about ways your child can be active and participate in the activities they enjoy at home and at school.

When to seek help

• If you notice a sudden change in the size of your baby’s head, or they are sleepier or upset than usual, call your GP or the Spinal Disabilities Clinic team.
• If your child complains of headaches, back pain, or leg pain regularly, tell your Spinal disabilities team know.
• If your child is vomiting, very sleepy when they shouldn’t be, or has a shunt and has swelling near the shunt site, go to your local emergency department.

Latex allergy

Children with spina bifida are more likely to develop an allergy to latex so try to avoid using latex products. Latex is often found in balloons, medical gloves and bandages. There are usually latex free versions of these items available. Latex free products may say “latex free” or be marked with this symbol:

Care at home

• Avoid having latex containing products in your home or in your child’s classroom.
• Inform your child’s school and any health care providers or people caring for your child that your child has a latex allergy.

When to seek help

• If your child has come into contact with latex and has developed a rash, itchiness, or other symptoms, see your GP.
• If your child is having difficulty breathing or swallowing, or their lips appear swollen, dial Triple Zero (000) and ask for an ambulance.

Skin care

Children with spina bifida often have reduced sensation to parts of their body. This might mean they do not notice when they have an injury or when something is causing damage to their skin. Your child can still participate in all the activities they love, but skin monitoring should be part of their regular routine. Read more about skin care for people with spina bifida.

You know your child best. If you are ever concerned about your child, contact your GP or the Spinal Disabilities Clinic team. If you can’t get in touch with your regular team and you think your child is very unwell, or you are concerned about your child’s breathing, go to your nearest emergency department.

Developed by the Queensland Paediatric Rehabilitation Service, Queensland Children’s Hospital. We acknowledge the input of consumers and carers. Resource ID: FS375 Reviewed:  August 2023

Disclaimer: This information has been produced by healthcare professionals as a guideline only and is intended to support, not replace, discussion with your child’s doctor or healthcare professionals. Information is updated regularly, so please check you are referring to the most recent version. Seek medical advice, as appropriate, for concerns regarding your child’s health.