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    Your support of DEBRA International or a national EB group enables us to provide the best quality of life for families and individuals affected by EB.

Donation Account: IBAN AT65 6000 0005 1004 5254, BIC BAWAATWW, DEBRA International, Am Heumarkt 27/1, 1030 Vienna

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Postnatal care

This information is intended for women or men with EB who are caring for a new baby. For the care of a baby with EB, please visit the section Caring for a baby with EB.

Breast-feeding

Many women with EB will assume it is not a possibility to breast-feed, and indeed for some women, the extreme fragility of their skin will not easily allow for them to make this choice. We do know some women who have breast-fed despite their EB. This may be for just the first few days when the baby gets the first milk or colostrum which is rich in antibodies, or may go on for many months. However, no woman with EB should feel the pressure to breast-feed, as you are the one who is best able to judge whether this is something that might be a possibility for you.

If you do elect to try and breast-feed, ask your midwive to ensure the baby is 'latched onto' the breast correctly. This is of vital importance to all breast feeders, but is crucial in the case of the women with EB in order to prevent soreness. The most important thing is to ensure the baby does not take just the nipple into his/her mouth – they should also have some of the areola, which has tougher skin. This correct positioning also helps the milk to flow. If you do develop sore nipples you might be helped by using a nipple shield.

Most women who do elect to breast-feed will need a supportive bra, which can be padded with Mepilex Lite or Mepilex Transfer to reduce friction. Women who breast-feed usually use breast pads to absorb any excess milk. These tend to be made of materials that may adhere to any open areas on your nipples. You might therefore like to use Mepilex Lite or Mepilex Transfer as substitute breast-pads.

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Bottle-feeding

If you elect to bottle-feed you must not feel guilty. Breast-feeding is not easily achieved if you do not have EB, and is frankly impossible for some women with EB. The considerations in EB, for an affected mother or father are ensuring you can hold the bottle comfortably and can undo the top with ease. We have had one woman who used her chin and chest as an additional help for her hand when holding the bottle. You might also like to buy a steam sterilizer rather than a Milton sterilizer (by Procter & Gamble), as you may find Milton will sting any open wounds you might have on your hands.

Sanitary towels

You will need to use sanitary towels in the postnatal period, and on the whole we have found Always towels to be the most suitable for women with EB. You may find the towels designed for use at night are more absorbent and therefore more suitable for use in this period.

Equipment

The market is awash with baby equipment, some of which is essential and some of which is expensive and entirely unnecessary. As many of the pushchairs, car seats etc. are difficult to manipulate, even if you have full hand function, you will be well advised to visit a large store to try out equipment before you buy. It may also be helpful to get in touch with other families who have faced these difficulties and who may be able to advise you. Yet, as the market for baby equipment is so huge and constantly being updated it is difficult to advise on specific pieces of equipment. The other variable is of course that all people with EB are different with different capabilities. However, one piece of general advice given to all potential parents is to make your buying rather minimalist until you work out exactly what it is you will need and use. Your midwife, health visitor or antenatal class teacher will be able to advise you on what is absolutely necessary before your baby is born.

All that remains now is to wish you the very best of luck and much happiness with your new baby.

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