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Caring for a baby with EB

Body contact

  • Physical contact is of great importance for babies with EB - just like for any other baby - as well as for their parents. The child will get enough protection by the dressings, so physical contact is not only possible but necessary. Snuggling your baby is certainly more vital than avoiding one or the other blister.
  • Even though the baby's skin can be extremely vulnerable you are allowed to and should touch it – ideally with your bare hands. In case you prefer wearing gloves, attach any greasy cream or Vaseline, otherwise the gloves might stick to the baby's skin.

Lifting up the baby

  • As far as possible, place the baby on some small soft pad like lambskin, a soft blanket, a pillow or anything similar. Thus you can lift the baby together with the padding and prevent injuries.
  • If you want to lift the baby without padding, roll it slightly to the side, carefully slide one hand under the baby's bottom and the other hand under its head or neck, roll it back and then lift carefully.
  • Never pick up babies with EB from under the arm. This could easily cause serious blisters.

Bathing the baby


The bath is used for disinfection of wounds and also helps to remove dressings more easily.

How often?

  • Every second day a full-body bath with Betaisodona (1:10; the water turning a good brown colour) should be taken.
  • Following this plan may be helpful: Mon/Wed/Fri, completely irrelevant whether morning or afternoon (depending e.g. on the support by home health care services). At the weekend a break may also be taken. This will not have any negative impact on wound healing.

How warm?

  • The bath should not be warmer than lukewarm, as too warm water is painful on the skin.

How long?

  • Bathing time about 15 to 20 minutes (at least until remaining pieces of dressing can be removed easily).

Before the bath

  • Remove all loose parts of the dressing before the bath. Dressings which stick to wounds should be left in place.
  • We recommend to wrap the child in a soft cloth nappy to create a feeling of security as well as a precaution against 'slipping' or other injuries.

After the bath

  • Dab the baby dry in a warm surrounding (use soft cloth nappy)
  • Ideally two people should be present for a full-body dressing

Feeding

  • Breast feeding is highly recommended and often possible.
  • It might be necessary, when the baby routes for the nipple and the skin on the face gets rubbed, to protect it with cream or ointment.
  • Teething gels or specialised preparations such as Gelclair can be applied to the teat or nipple or directly to the mouth to reduce pain when feeding.
  • Bottle-feeding: Sometimes the skin lining the inside of the mouth becomes blistered and sore. If the baby is finding it hard to feed because of the soreness we recommend a special teat called a Haberman feeder which contains a valve, reducing the need for strong sucking and allowing a good delivery of milk.
  • In case of painful blisters in the mouth - but only if the blisters interfere with drinking - carefully apply Herviros solution (slightly anaesthetising) to the affected area with a cotton swab before feeding. Do not apply extensively!

Changing the dressing


Please note: Disinfect hands before administering skin care. It is the most effective measure to control infection (see Disinfection - a key issue).

  • Ideally two people should be present for a full-body dressing.
  • One person holds the extremities and hands the utensils, the other person changes the dressing.
  • Required dressings are ready prepared, so that the bandaging can be done quickly.

How often?

  • The dressing has to be changed every two days.
  • In the nappy area it must be renewed as often as required.
  • If dressings (e.g. on legs or arms) are loose or come off, renewal is also necessary.

How to proceed

Starting at the legs you work upwards, with one person holding the leg and handing the bandages, while the other person does the bandaging.

  1. Prick blisters with a small sterile (disposable) needle and a swab (compress). Gently remove the liquid from the blister.
  2. In difficult areas (e.g. neck, head, ears, armpits, groin, nappy area), dline ZincCream – or any soft zinc cream – is recommended. Because of their soft consistency they can be spread directly on the wounds very easily and promote rapid drying of the wound and the healing of the crust.
  3. As first wound dressing Systagenix (Johnson & Johnson) is used. Broken
    skin should be carefully covered, so that additional bandage layers cannot stick to the wounds, causing further skin damage.
  4. As a second wound dressing, we use – depending on the required size – either Medicomp Extra or Medicomp Fleece Compresses (Hartmann). Vliwasoft Fleece Compresses (Lohmann & Rauscher), etc. can be used as well. The intention is to achieve a soft wound cover as protection from external influences.
  5. The two dressings are fixed with Peha Crepp (Hartmann), Raucolast (Lohmann & Rauscher) or other gauze bandages and finalised with additional adhesive tape (for fixing the gauze bandage).

Clothing and nappies


Clothing

  • Naked babies with EB may damage their skin by kicking their legs together and rubbing with their arms.
  • Cotton mittens and socks prevent the baby from scratching itself.
  • We recommend dressing the baby in a front fastening babygro (playsuit) initially.
  • If these are not flat seamed you will need to turn them inside out to prevent the raised seams from rubbing and causing blisters.

For detailed information on clothing in EB, see Clothing - What to mind.

Nappies

  • Cloth nappies are often recommended. Use a slightly bigger size and tie loosely at hips and waist.
  • Disposable nappies are also fine; make sure the nappy is a good fit to reduce friction.
  • It may be necessary to line the nappy with a soft liner (e.g. soft compresses) to protect the skin from the edges of the nappy.
  • Good experiences have been made with Pampers Premium nappies.
  • Creams and dressings may be prescribed on medical advice

General comments

  • A baby with EB does not necessarily scream because it has EB. In fact it may – like any other baby – cry for various reasons!
  • Using dummies may cause blisters around the edge of the dummy-plate, on the lips or in the mouth. But some babies do not have any problems with dummies at all.
  • Do not use rectal temps, but measure the temperature in the ear.
  • Nothing inside the rectum: Avoid suppositories or enemas. If it is really necessary, be extremely cautious and use a lot of vaseline.

Sources of information:

Alexandra Waldhör, EB Nurse, EB House Austria, Salzburg (2011)
Jacqueline Denyer, EB Nurse Consultant, DEBRA UK (2009)

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