Many people with spina bifida have a loss of feeling in their feet, legs or buttocks. Cuts, burns or pressure sores can occur without being noticed, as feeling pain usually alerts us to damage at an early stage. Infection can set into damaged areas as the circulation can be poor, and because of the loss of feeling. People with reduced mobility may also have lymphoedema (see separate paragraph), a swelling of their tissues (usually in the legs and feet), which reduces their circulation further and stretches the skin.
Burns and scalds are very common in people with spina bifida. Reduced or altered sensation to parts of the body, especially the feet and legs, mean that injury can happen without being aware of it. Pain helps to protect us - if something is painful, we stop doing it, or move ourselves away. If skin sensation is reduced or altered, we don’t always feel pain (or much pain), so we may stay in contact with the source of the damage for much longer than if we could feel it.
Many people with spina bifida also have poor circulation to their feet and legs, so healing can be very slow and difficult.
Here are some tips for preventing burns for people with spina bifida.
Babies and small children.
As soon as your baby is born, check your home for burn hazards and make them safe straightaway, rather than waiting for your baby to start moving around. Babies can begin to roll quite early on, and common hazards are radiators and the pipework below them. These can cause serious burns if your baby rolls onto them-and as they won’t feel it, they won’t cry. Box in all exposed central heating radiators and use radiator guards or change to ‘cool wall’ radiators. If you are on a low income you may be able to get help with these costs by contacting your local council, social worker or through a charity. Try using the turn2us charity. As children get bigger, they may lean on radiators and not realise they are on, so encourage them to always check first with their hand. Use fireguards if you have open fires, gas fires or electric heaters. Anchor free-standing ovens using anti-tip devices/brackets.
When your child goes into their own bed, position it well away from the radiator so their feet can’t touch it. Avoid using hot water bottles or similar.
Always check your child’s bath water yourself, using a bath thermometer. The water should be 37-38o C (babycentre.co.uk) As your child begins to walk about, they may be more unsteady than other children, so check there is nothing they can burn themselves on if they fall...and continue to do all the things you’d usually do to prevent accidents, like using the back rings of the hob, pushing saucepan handles away from the front of the hob, and keeping electric flexes to the kettle toaster etc, out of reach. Even if your baby isn’t walking today, these are good habits to get into.
Around half of all burns and scalds to children are caused by hot drinks, according to the Children’s Burns Trust. Keep hot drinks well out of reach of children, avoid carrying them when young children are nearby, and remind visitors to your home that they need to keep hot drinks out of reach of children. Use placemats rather than tablecloths to stop accidents from the cloth being pulled and causing spills. Carry plates to the pans on the hob, to avoid carrying pans with hot contents across the room.
Take care with buckles and car seats, these can become very hot and cause burns, especially if the car has been left in the sun.
Older children
As children grow up, teach them over and over how to fill their bath, cold water first, and to check with a bath thermometer before getting in. Fit a thermostat to the shower that limits water temperature to 44 °C. (http://www.hse.gov.uk/pubns/hsis6.pdf)
Encourage them to protect legs and feet from sunburn with clothing and sunblock, and don’t let them walk on hot sand barefoot.
If using hair straighteners or hairdryers, place them on a high surface to cool, rather than the floor or low coffee table. When children start using hair dryers themselves, teach them not to place them on their lap between uses.
When children start making hot drinks or learning to cook: teach them not to overfill bowls/plates/mugs, encourage them to protect their legs with two absorbent towels with a waterproof apron between the layers, and find a way for them to carry hot drinks safely, such as an insulated thermos cup/mug with a lid.
Laptop computers and chargers can become very hot underneath. Using a laptop desk can prevent burns.
If your child does have altered or no sensation in their lower body than it is a good idea to just have a quick check for any marks, particularly on your child’s legs and feet when getting undressed at the end of the day.
Adults
During adult life, your skin sensation and circulation might deteriorate, and affect greater areas of your legs and buttocks. Leaning on hot radiators is one of the common ways adults with spina bifida get burnt. Cooking spillages can also be difficult, especially for wheelchair users. Protecting your legs and feet with two absorbent towels with a waterproof apron between the layers, should make sure hot water doesn’t penetrate to the skin by the time you reach a cloth. If you bathe, use a bath thermometer to check the temperature before you lower yourself in.
Fit a thermostatic limiter to the shower, so the water is at 44 °C at the most. Take care when using hair straighteners or hair dryers, they get very hot so don’t rest them on your lap or leave them on the floor to cool.
‘One cup’ water boilers can remove the need to handle kettles full of boiling water, and induction hobs can cool much quicker than conventional hobs, if you find you forget easily.
More information
The Fire Service has comprehensive advice for enhancing safety in the home:
NHS Choices has the following advice in event of a burn or scald
Go to A&E if the person has-
As people with spina bifida might sustain deep burns without realising, going to A&E to check out all burns is a sensible move.
See a podiatrist/chiropodist regularly to have your toenails cut and hard skin removed if you have loss of feeling or poor circulation in your feet. Use a foot-softening cream on your feet and moisturiser on your legs to prevent cracking as bacteria can enter this way. If your skin is very dry, use aqueous cream instead of soap when bathing. Dry carefully between your toes and treat athlete’s foot straight away. Creams and sprays are available from pharmacies and larger supermarkets.
Pressure sores, also called bedsores or decubitus ulcers, are areas of broken skin and underlying tissues that have been damaged by pressure. Pressure (such as sitting in the same position for too long) restricts blood being supplied to the area, so the tissues become deprived of oxygen and toxins build up, which causes the skin and tissue cells to die. People with spina bifida may not feel this damage beginning because of reduced feeling in parts of their body.
Make sure you have good quality, well-fitting shoes that do not cause red marks on your feet. You may want to ask your GP to refer you to an orthotics centre to have shoes made especially for you. The styles are much better than they used to be!
Make sure you have a well-fitting wheelchair with a pressure-relieving/ reducing cushion. Always use your footplates to support your feet and stop your legs from ‘hanging down’, which is bad for the circulation. Check your wheelchair does not leave red marks on your legs or body.
Change your sitting position frequently throughout the day, and have a chair at home to sit in other than your wheelchair. Try to spend part of each day off your bottom.
Check your skin regularly for pressure sores using a mirror to see areas of your body you cannot see otherwise. Pay particular attention to areas of skin where you have little or no feeling.
When you see a reddened area of skin, tell your GP straightaway - don’t wait to see if it improves on its own. If left untreated they can take a lot longer to heal. If you do have a skin breakdown, make sure your health professionals look at the reasons why it happened, and don’t just apply dressings. Eating a diet with some extra protein will be important to healing.
If you know you are going into hospital, let them know in advance if you are at risk of pressure sores so they can have the right equipment ready for you, such as a pressure relieving mattress.
Cellulitis is a skin infection that can occur anywhere on your body. If you have dry skin on your legs, if you have poor circulation or sensation and you are not aware you have cut or damaged your skin, you may be more prone to cellulitis. Lymphoedema can make you more prone to cellulitis too.
Cellulitis causes the area of affected skin to become red, hot, swollen, tender and painful. Symptoms include:
See your GP as soon as possible if you think you may have cellulitis as the sooner you start antibiotic treatment, the better.
Lymphoedema is a swelling often of your legs which is due to fluid collecting in the tissues under the skin. This can leave you prone to cellulitis and skin breakdown, and can interfere with independence as your legs get heavy and difficult to move. Ask your GP to arrange treatment with pressure stockings or appliances, which are very effective.
