Spina bifida can cause reduced sensation (or feeling) in some parts of the body, particularly the legs and bottom, so it’s important to check the skin regularly for cuts, scrapes, burns or pressure sores. For example, your child may not notice if their shoe or AFO (ankle foot orthotic) is rubbing, or if a pressure injury is developing because they have been sitting in the same spot for too long. Here are a few things to be on the lookout for:

Blisters

A blister might look like a bubble of fluid just under the skin usually from something rubbing on the area, such as shoes. Blisters can also sometimes look very dark underneath and is a sign that some of the deeper tissues under the skin might also be damaged.

If you notice a blister, try to work out what has been rubbing against the skin (for example, shoes or AFO), and do not use them/it until the blister has healed.

Cuts and scrapes

Check for any scrapes or cuts on your feet and other areas where you there is no or reduced sensation every day. Feet will often get cuts and scrapes if shoes are not worn. The best time to check is after showering/bathing. Also look closely under and between your toes. This is an area that can have trouble staying dry and it can be easier for the skin there to crack and open up. If you notice that the area looks moist or you are getting some areas that are cracking, ask you GP or stomal therapist for advice on creams or powders to help the area stay dry.

Burns

When you can’t feel the sensations of hot and cold, you don’t know when something hot has touched your skin, so you don’t pull away quickly. People with spina bifida are often burned by hot water (scalds) or having something hot placed on their lap (such as hot food), or by sitting on a hot surface (for example, a metal seat or a hot seatbelt).

Take extra care around hot things especially when in the kitchen or cooking. Check the temperature of the water in the bath or shower with your hand before you get in. Check the temperature of your seat belt or a metal bench before you sit down and always remember to wear shoes when you go outside.

Pressure injuries

Pressure injuries (also known as pressure sores or bed sores) can develop on the skin and underlying tissue when there is constant pressure or friction. This could be part of a wheelchair or AFO, a seatbelt, a nappy or even a mobile phone. Pressure areas look like a red or dark area on the skin, or an open sore.

If you notice pressure areas or sores, get advice from your GP or your child’s care team on how to manage and prevent them. This may include dressings and/or staying off the area until it has healed. If the affected area is on your foot/feet, you may have to use a wheelchair until it heals.

People with spina bifida will often have problems with blood circulation in their lower limbs so sores may take longer to heal. Staying off the area lets the blood get to the area so it can heal faster.

An untreated pressure injury can get infected and make your child sick. Sometimes hospital admission may be required until the area heals.

Preventing pressure injuries

There are lots of things you can do to prevent skin injury and pressure sores.

Check your child’s skin regularly. Especially the bottom, ankles and feet. This should be done every day as part of your routine. For example, it can become a part of your nappy change routine for a younger child. An older child may be taught to use a mirror to check their feet and bottom before their bath.
Your child should wear shoes when they are walking, especially outdoors. If you notice shoes, splints, or orthotics are leaving marks on your child’s feet, remove them and speak to your spinal disabilities team.
Keep skin dry. Avoid leaving your child in wet or soiled clothes. Speak to your GP or the spinal disabilities team about barrier creams and powders to keep skin dry and protected under nappies.
Be mindful of sand getting inside your child’s clothing, shoes or splints and of objects being in pockets or underneath them when they sit.
Be careful during transfers in and out of beds or wheelchairs when skin might drag across a surface and in situations where your child is sitting for long periods of time.
Regular change position to relieve pressure on the skin. For children who spend a lot of time sitting on a chair or in a wheelchair, it’s important to do regular ‘pressure lifts’ or ‘weight shifts’ to allow the blood supply to get to all areas of the bottom. This should do this at least every hour, even if they are sitting on a special pressure-relieving cushion.

To do a full pressure lift, lift your bottom up for 10-15 seconds. You can also lean to one side in the chair for 10-15 seconds and then the other side or lean forward onto your knees for 10-15 seconds.

When to seek help

Speak to your GP or your child's care team if:

your child has any red marks on their skins that last more than 30 minutes.
an injury is looking worse over time, is oozing, becomes swollen, or if the skin surrounding an injury becomes red or hot to the touch.