Care of the newborn with blistered skin
Although the dramatic finding of a neonate with many blisters suggests a diagnosis of EB, it is generally it is not possible to give a definitive diagnosis of EB in the acute situation. This requires time, observation, examination and may involve investigations such as skin biopsy. It can be difficult to be patient under the circumstances, but it is important not to focus too much on getting the diagnosis as soon as possible. Furthermore, reading too much about EB with its many variants at this stage will probably overload you with information that will largely be irrelevant to your child and their particular form of EB. Instead channel your energy into taking care of the baby’s more immediate needs, namely:
  • Skin and wound care
  • Nutrition

Wound care

Wound care aims to promote healing, to reduce the risk of infection and to minimize pain. Dressings help to maintain a clean environment and covering the wounds will allow the baby to be held, promoting bonding.


Note that whilst a sterile technique may be possible in a hospital environment, at home it is neither necessary nor practical – the accepted standard for EB dressings is cleanliness. Dressings for wounds should be changed every day whilst the nappy area is dressed as often as needed.

Remember to wash your hands carefully before and regularly during dressing changes. Make sure you have your supplies ready before you begin:
  • Sterile needles/ lancets
  • Antibiotic/ antiseptic ointment if needed
  • Vaseline, Aquaphor® or other
  • Contact layer eg Vaseline gauze/ Mepitel®, Restore®
  • Soft conforming stretch rolled gauze
  • Tubular retaining dressing - avoid tape or adhesives
Ideally there should be 2 people available for the dressing procedure; having assistance greatly speeds things up. Giving paracetamol or ibuprofen beforehand may be helpful; stronger analgesics such opiates may be needed under certain circumstances but will cause drowsiness.

Removing previous dressings

It may be helpful to deal with one limb at a time. Babies tend to struggle/ kick out, trying to hold bare limbs will lead to injury and bleeding. Furthermore, premature exposure of wounds will lead to drying out and more pain. Do not pull on the contact layer if it is at all stuck, instead soak it off with water, or with Vaseline/ Aquaphor®.


Depending on conditions, it is usually not necessary to have a full body bath every day. Instead, it can be performed every other day or sometimes Monday/ Wednesday/ Friday. Bathing can be difficult – damage may occur during bathing, carers may be anxious, and exposure to air and water may be painful. Giving pain killers before the bath may be helpful. A bathtub cushion or bath cradle eg Munchkin™ maybe also useful.

Pain-free washing with saline.

From Debra NZ, using a solution that matches body salt concentrations causes less disruption to cells and less stinging. Body temperature saline is ideal. It can be bought prepared or made using the following formula: 9 grams of salt (approximately half a tablespoon) in 1 litre of boiled water. Cold solutions can block healing process at least temporarily and may cause hypothermia.

A watering can double as a good ‘hand’ shower for a rinse.

Drain blisters

Small blisters may be managed with a layer or ointment or dressing if protection from further trauma is needed.

All blisters that are tense or larger than 1-2cm should be drained with a puncture hole near the edge, choosing the part that would be lowest when sitting, standing or lying down as appropriate. Make the hole large enough (~3mm) to prevent fluid reaccumulating; this should be painless as long as you stay parallel to the skin surface. Drainage will reduce pain, prevent the blister from enlarging and encourage healing.

Skin that accidentally comes off when you handle the baby can be ‘regrafted’ ie replaced where it came from and can stick back and heal, as long as you can do this within a 3 minute window.

Cleanse skin/ wounds

A mild non-perfumed product such as Cetaphil® or Dove® is fine. Rinse with water/ saline afterwards. If necessary pat dry, but do not rub.
  • Clean wounds can be dressed with non-medicated ointments such as soft zinc cream.
  • Antibiotic ointments such as Polysporin®, bacitracin etc are often used, but are probably unnecessary in simple wounds.
  • Antiseptics such as chlorhexidine gluconate/ Betadine® may theoretically delay healing.
A variety of ointments/ creams can be used but should be carefully applied; a non-adhesve contact layer eg Mepitel®, Restore®, Telfa® or Vaseline gauze can be ‘buttered’ with some ointment before it is placed over the wound. However, do not cover the contact layer with too much ointment otherwise it may block the drainage of exudate and make the wound too wet.

Infected wounds

There are certain features in a wound that suggest that it may be infected:
  • Increased exudate, pain or swelling
  • Increased redness or warmth compared with surrounding skin
  • Odour
  • Bleeds easily
  • Fever: do not use rectal thermometers.
Poor nutrition and anaemia reduces the resistance to infections, whilst some patients with severe EB may also have immunological defects. Infected wounds should be treated promptly. Consult with your primary care practitioner early. Some medications may not be suitable for the newborn eg silver sulphadiazine (SSD).

Contact layer

This layer is important in that it covers and protects the wound, but then you should be able to easily and safely remove it without causing trauma. Examples include Adaptic™ Touch, Mepitel®, Restore® contact layers. The contact layer should overlap the wound by 1cm to reduce risk of sticking to outer bandages should this layer shift. In absence of infection, these dressings can be left for several days. More sturdy skin may be able to tolerate use of cheaper paraffin gauze or Adaptic™ non adhering but these are more prone to dry out and may cause problem with removal.

There are a variety of different dressings that can be used for different types of wounds:
  • In wounds with more exudate eg denuded wounds, other dressings are used primarily their powers of absorption.
    • Foams offer protection, and are lightly absorbent. Bordered foams may cause damage in those with very fragile skin. Examples include Allevyn®, Biatin®, PolyMem®.
    • Alginates are moderately absorbent and turn into a gel when loaded with fluid.
    • These have no antimicrobial action by themselves, thus apply antimicrobial ointment beforehand if necessary.
  • Hydrogels are moisturizing and thus are good for dry, crusted wounds, but then contraindicated in exudative or infected wounds.
Layers of conforming gauze are wrapped over the contact layer, and then secured with either a tubular retention dressing eg Surgilast, Tubifast™, or a cohesive bandage such as Peha-Haft® or Coban™.

Special areas

  • Diaper areas. Diapers may cause blistering on the thighs and waist. Friction can be reduced by liberally applying Vaseline etc. Disposable diapers are preferred as they are better for keeping urine away from the wound. Some brands are supposedly softer than others. Some parents cut the elastic off the legs to reduce irritation, whilst others put fleece/ soft fabric at the waist and legs. Mepilex Lite®, Mepilex Transfer® is also useful but may be too costly due to the frequent need for changing.
  • Hands. The combination of Vaseline and soft mittens are often used. Although the fingers and toes are at risk for webbing/ curling, it is nearly impossible to wrap individual fingers in the newborn without actually causing more damage. The primary aim is to keep the thumb out from the palm; a ball of Vaseline gauze may be placed in the palm to protect it from the fingers when the baby makes fists.
  • Oral lesions. Mouthwash eg ‘magic mouthwash’ with viscous lignocaine, liquid diphenhydramine (Benadryl®), liquid aluminum hydroxide/ magnesium hydroxide (Maalox®) can be applied with spongesticks. In older children, they can be given as a swish for one minute and then spit out, once every four hours.
  • Eye lesions. Include blepharitis, conjunctival blisters, corneal ulcerations and scarring and obliterated tear ducts. These need specialist care.


The aims are to avoid overheating/ keep cool with soft loose clothing. Other considerations include:
  • Provide easy access for diaper changes, dressing checks etc.
  • Avoid elastics or any ornamentation eg lace/ brocades; similarly, Velcro is preferred over buttons, zips and snaps. Fashioning loops for the bottom of zips can provide useful countertraction when using them.
  • Remove tags. Clothes may need to be turned inside out to reduce rubbing from seams, etc.
Specialised clothing is popular: Skinnies™ seamless garments help dressing retention whilst minimizing trauma, whilst EB Haus (Austria) has reported good experiences with Dermasilk® clothing – the silk has long smooth fibres and is coated with antimicrobial AEGIS. Sometimes an additional soft bandage layer may be needed. Skin should be lubricated/ moisturized.

Additional considerations:
  • Mittens and socks.
  • Shoes should be soft and sensible – there is a list of tried and tested shoes (Louise Stevens, Clinical NC at Sydney Children’s hospital)
  • DIY knee pads (Shannon Page, from Debra Australia resources page)
  • Loops can be added to help pull up pants
  • Use sheepskin or foam padding to reduce friction on surfaces eg chairs, beds, car seats
No benefit has been seen from the use of special mattresses for EB patients. Soft sheets are adequate; if there are wounds at the back of the head, applying some Vaseline on the sheet may reduce friction but can be difficult to clean. Alternatively an intervening layer like Allevyn® sponge can be used.

Despite the fragile skin and the anxiety when handling a baby with EB, physical contact is extremely important for bonding. You can still touch and cuddle the baby, as long as you are gentle and take sensible simple precautions such as trimming your fingernails, removing jewelry and wearing soft clothing. Don’t lift the baby from under their arms but lift them from below (See Independence Australia ‘How to handle a baby ’). Some prefer to carry their baby on a foam pad, sheepskin or pillow.


  • Calories are required for growth and development as well as wound healing. Lesions in and around the mouth may cause problems with feeding, in particular breast feeding. Bottle feeding may be needed though with care, bonding can still occur. It is advisable to involve a dietitian early if weight gain is suboptimal.
  • When breast feeding, protect the skin on the baby’s face with cream or ointment as the baby roots for the nipple
  • Teething gels eg Gelclair® can be applied to the teat/ nipple or directly on the baby’s mouth to reduce pain when feeding.
  • Due to difficulty sucking, EB babies may need special nipples such as those used for cleft palate babies eg SpecialNeeds® feeder (previously called the Haberman feeder) or Pigeon™ nipple, with a reservoir and valve that allows milk delivery without vigorous sucking.
  • Herviros® solution is slightly anaesthetizing (contains Tetracaine) and can be applied in judicious amounts to painful blisters with a cotton swab.
  • Acidic foods eg tomato sauce, orange juice, anecdotally makes the skin of patients with RDEB more fragile.
  • Soften food

Common questions

Is EB contagious?
No, it is a genetic condition and not caused by an infection. It cannot be caught by contact.

Do I need to use sterile saline?
No. Clean tap water (boiled then cooled) is sufficient at home.

What causes EB?
All forms of EB are genetic in origin. It has been estimated that 1 in 227 of us carry a defective gene that can cause EB. Key genes have been identified in most but not all subtypes.

Is there a cure for EB? No, although there is significant research going on. Some trials for specific subtypes are progressing at different speeds.

Is EB Inherited? In some cases, it is possible to determine if a fetus has EB at about 10 weeks into pregnancy, using amniocentesis (after 11th week) or chorionic villus sampling (as early as the 9th week).

Other information

EB wound care videos – Stanford
Lorraine Spaulding basic are tips pdf
Debra international guidelines and from UK page
  • Orthodontic care (dental nursing)
  • Hand splinting and exercises (Birmingham children’s trust)
  • Debra international media centre
  • Caring for someone with EB
    • Life with Epidermolysis bullosa book – chapter impact on daily life
    • EB handbook by EB Haus
  • Nutrition
    • Heynes L 2008 free download from Debra UK
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