Spina Bifida - Protecting your skin

Disclaimer: This fact sheet is for education purposes only. Please consult with your doctor or other health professional to make sure this information is right for your child.

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What is different about skin and Spina Bifida?

People living with Spina Bifida can develop skin problems due to limited movement, weak muscles, poor sensation or lack of feeling and often poor circulation.

Signs that there might be a problem include:

  • Discolouration of the skin (red, white, brown or purple)
  • A red mark which does not fade within 10 minutes.
  • Presence of blisters or sores
  • Blood on clothing e.g. Underwear and socks.

Whilst everyone needs to take care of their skin, there are a few additional issues for people living with Spina Bifida such as:

Altered or Loss of feeling

Due to decreased or altered sensation, a person living with Spina Bifida may not be alerted to potential dangers or differences in temperature and textures (eg. hot, cold, sharp, rough or tight). This means that injuries may occur and simple burns or cuts can lead to wounds that take much longer to heal.

Pressure Injury

Pressure injuries are caused by damage to the skin and underlying tissues from constant pressure on areas such as the buttocks, hips, heels and knees. The pressure obstructs the normal flow of blood, oxygen and nutrients to the skin. If untreated, these injuries can develop into deep ulcers that take months to heal. In some cases they require surgical interventions and a long period of hospitalisation.

What can be done to prevent skin breakdown

  • Avoid sitting too close to fires 
  • Do not place hot food and directly on your lap
  • NEVER use hot water bottles
  • Always wear sunscreen, a hat and protective clothing if outdoors for long periods.
  • Ensure bath water is not too hot – run cold water first.
  • Always check metal connectors on seat belts in cars and on wheelchairs that have been sitting in the sun, as well as metal foot plates.
  • Avoid any direct contact with hot surfaces such as metal playground equipment, concrete in the playground or surfaces around swimming pools.
  • Check your skin daily!  
  • Use a mirror every morning and night to checkfor signs of a skin problem, such as on your bottom and feet.
  • Always wear correct fitting shoes or thick socks to protect your feet.
  • Dry between your toes after each bath or shower.
  • Always check skin after one hour when using new splints, orthoses or shoes to be sure they are not causing pressure injuries. If you are concerned, make an appointment to have them checked and make adjustments.
  • Move and shift your weight regularly to take the pressure off your body.
  • Avoid storing objects in the pockets of your clothes or on the seat of your wheelchair.
  • Ensure your child’s legs and feet are covered when crawling, for protection.
  • Change nappies, pads and pants regularly to avoid skin breakdown from urine and faeces.
  • Maintain a healthy weight.

If you use a wheelchair to mobilise, please see to the “pressure relief” fact sheet for more information about pressure injury prevention.

If you think you have a pressure injury or a problem with your skin, seek urgent medical advice from your GP or contact the Spina Bifida Service.

You can find further information about skin management and Spina Bifida at:

Things to remember:

  • Prevention is better than cure, and most pressure injuries are preventable.
  • A regular habit of checking skin morning and night is best practice.

 

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The Children's Hospital at Westmead
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Sydney Children's Hospital, Randwick
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Hunter New England Kids Health
www.hnekidshealth.nsw.gov.au

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