National Neonatal EB Baby Boxes
The National Neonatal Epidermolysis Bullosa (EB) boxes are an initiative between Mölnlycke Health Care, Independence Australia and DEBRA (Dystrophic Epidermolysis Bullosa Research Association) Australia. The aim of this initiative is to provide best practice information, education, and resources to those clinicians who are looking after a newborn baby with suspected EB. Early information, education and early use of best practice dressings, is imperative for better health outcomes for the baby. Supply of these EB boxes ensures appropriate care is provided therefore reducing the trauma that may be experienced from inappropriate dressings use. They also provide a consistent approach to newborn management of EB cases around Australia.
What if your centre has a baby with a suspected diagnosis of EB?
Contact your local EB hospital and Independence Australia
To find your nearest specialist centre please email [email protected] or call 1300 290 400
Wound care
Click here to download our list of appropriate dressings required for care of a baby with a suspected diagnosis of EB (attach hyperlink here). Your hospital may have access to EB appropriate dressings in their emergency department, burns, or surgical unit. A wound nurse or nurse consultant may be able to recognise items on this list. Your state EB nurse may be able to liaise with your hospital’s wound nurse to help you identify items to support the newborn.
EB Preventative care
Click here for EB newborn care recommendations to put preventative care methods in place to reduce the risk of the newborn receiving more wounds in hospital from monitoring.
Early contact with your state’s specialist centre and with the Administrator of the National Epidermolysis Bullosa Dressing Scheme (NEBDS), currently Independence Australia, will assist the team looking after a newborn to access EB appropriate wound care, education and referral to an appropriate specialist centre as fast as possible.
Transfer
Transfer of a baby with moderate or severe EB to a centre of expertise will often be the choice of the neonatologist or paediatrician. However, immediate transfer is not always possible, and movement or transfer can cause further trauma. The information and materials in this box will help to provide safe, best practice care in the interim.
Requesting an EB Baby Box
If your hospital and state specialist centre have concluded that a baby box is required, contact the NEBDS Administrator, to organise for a box to be couriered to your hospital. The box contains supplies for approximately 2-3 dressing changes while your hospital is in communication with the specialist hospital and are formulating a care plan for the baby.
Call 1300 290 400 to request a box.
Hospital Education and referral
The NEBDS has an EB nurse specialist that is able to provide antenatal and/or postnatal EB specific education for hospitals that suspect a baby with a diagnosis of EB. This may come about when a baby is born with blistering or wounds, or if an expecting mother or father have a diagnosis of EB, increasing the risk that the baby may also be born with this condition.
Please contact Independence Australia to discuss the referral process and determine what services you can access through the NEBDS Administrator, to support your hospital and the family.