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This Guideline is applicable to all staff in neonatal units in the West of Scotland. Staff should also refer to relevant drug monographs
The guideline covers the immediate care of neonates with Epidermolysis Bullosa (EB), or neonates provisionally diagnosed with EB.
Epidermolysis Bullosa (EB) is the generic term for a genetic determined blistering skin condition.
The common factor is the fragility of the skin and mucous membranes and a tendency for the skin to blister when exposed to minimal everyday friction and trauma. EB is commonly sub divided into 3 major groups - simplex, junctional and dystrophic, however some conditions such as Bullous Ichthyosiform Erythroderma (BIE) are often included within the 'EB' umbrella as this condition also features dry skin and blistering.
In severe forms of EB, blisters and wounds are usually present at delivery or result from handling immediately after birth. In milder forms of the EB condition, these will often appear during the neonatal period. Secondary infection is a primary complication.
Choices of analgesia should be chosen to reflect the likely degree of discomfort. Choices will include Paracetamol or Morphine. Pleas refer to the WoS Neonatal Pain Guideline for details of neonatal dosages and pain assessment tools.
Recommended and First Choice dressings for neonates with EB - Skin
Dressing type: Polymeric membrane Brand: Polymem
This is the first choice dressing for severe neonatal wounding/critical colonisation/infection. Wear time is as determined by exudates level.
Change when wet to avoid hypothermia.
Recommended and First Choice dressings for neonates with EB – Nappy Area
Dressing type: Hydrogel impregnated gauze Brand: Intrasite Conformable or Hydrosorb
This is for wounds/blisters in nappy areas. Can be used over nappy creams such as Bepanthen or barrier creams such as Proshield. Change daily or when dry. May need a primary contact layer dressing (Urgotul) if severe skin fragility.
Small neonates may be at risk of hypothermia.
Recommended and First Choice dressings for neonates with EB – Between Digits of fingers/toes
Dressing type: Hydrofiber Brand: Aquacel
For very moist wounds where it is difficult to keep dressings in place. Between digits where there is risk of fusion. Change dressing every 3-4 days.
Should not be used if no wound exudates present.
Cannulation - Use a site where skin is intact, hold limb firmly using soft gauze, compress the limb manually rather than using a tourniquet, to avoid shearing of the skin. Wipe gently with an alcohol swab, do not rub. Cannulae can be fixed using Mepitel Film or Mepitac ® or Siltape ® (the same thing on a roll), fix securely as it does become loose when moist. Soft One ® (cohesive bandage) can also be used over tapes to secure them.
*Splints should be well padded.
Blood Pressure - Place Vaseline gauze with padding around the arm before application of blood pressure cuff. Avoid taking blood pressure more often than necessary.
Pulse Oximetry - This should be done using sensors which can be placed by protecting digit with clingfilm or Adaptic Touch.
If contact poor with using this base protective layer then it may be necessary to apply sensors directly to skin.
ECG Electrodes Hydrogel Electrodes can be used but ensure that a Silicone Medical Adhesive Remover (SMAR) such as Peel-easy is used for safe removal of electrodes without skin stripping
EB New Baby –Advisable items to be available
White Soft Paraffin/Liquid Paraffin BP 50:50 Ointment 500g
Flaminal Hydro 50g
Peel-Easy Adhesive Remover50ml spray
Bepanthen Nappy Care Cream 30G
nappy area cleansing
Polymem Non Adhesive Roll 10cmx61cm
Urgotul (10cmx10cm/15cmx15cm )
Kliniderm Lite Foam Silicone without border (10cmx10cm/15cmx15cm)
Comfifast red line
K-Lite Bandages 5cmx4.5m
HYDROSORB Gel Dressings 10cmx10cm
First choice of dressing in Neonates with EB
Sterile Orange Needles
Last reviewed: 08 August 2019
Next review: 01 August 2022
Author(s): Sharon Fisher – Paediatric Epidermolysis Bullosa Clincal Nurse Specialist RHC.
Co-Author(s): Other Professionals consulted: Dr Catherine Jury, Consultant Dermatologist – RHC Glasgow
Approved By: West of Scotland Managed Clinical Network for Neonatology