• Donate now...

    Through your donation you can help to secure the operation of the EB House Austria and support research on the way to a cure for Epidermolysis Bullosa. The EB House Austria is financed completely by DEBRA Austria, the patient organisation for Butterfly Children.

    Donate here

  • ... or help individually.

    Here you can find different ways to help "Butterfly Children" - with organising events, etc. 

    See how you can help

     

     

Donation Account: IBAN AT22 6000 0000 9000 0041, BIC OPSKATWW, DEBRA Austria, Am Heumarkt 27/1, 1030 Vienna

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Newborns with EB

A newborn that comes into this world with EB or suspicion of EB, like any other baby, needs especially shelter, security, food, closeness and a stimulating environment. Due to the vulnerability of their skin, the baby also needs professional medical and nursing care. The first days with a new baby is always exciting and characterized by uncertainty, which applies even more to a child born with a disease like EB. This section serves to simplify this first experience, with all its ups and downs and help to make it easier for you. We hope and wish that we can help you quickly to become familiar with this new and unexpected situation. With a little help and support you will soon be able to take good care of this newborn baby with his special needs.

Important points in a nutshell
  • Safety, security and love are the most important things for a child with EB.
  • Your baby may and should be touched one way or another and formation of a blister ("cuddly blister") can be taken into acount. 
  • If wearing gloves for a dressing change is needed, they should be rubbed with a high-fat concentrated cream or Vaseline.
  • It is better not to lift the baby under the arms first, but bring a soft blanket into position and then carefully lift it. 
  • When dressing the baby, make sure the clothing has no pressure points.
  • Breastfeeding is often possible with EB.
  • Not all babies with EB have pain, through careful observation it is possible to distinguish between pain and other causes of discomfort.  
  • If there is pain, pain treatment should be recommended by a physician/health care professional. 
  • Preparations are needed for the home during hospitalization.
  • Find a pediatrician or family doctor as soon as possible that you trust in your neighborhood.