Nikki,

This is what a quick google search brought up - breastfeeding does seem
possible but the Haberman is suggested as well.

I hope that mother & baby are able to find supportive care - and will be
able to dialogue with the pediatrician.

Warmly,

Juanita in France

J Jauer Steichen, MA, IBCLC, LLLL


http://www.debra-international.org/old/dload/Nutritionforbabieswitheb.pdf

What about breast feeding ?
Human milk is an unique food perfectly suited to most babies to promote
optimal
growth and development. It also contains precious antibodies which
contribute to the
baby's defence against infection. Breast feeding may also lessen the baby's
risk of
allergy. It is possible to breast feed a baby with EB, provided that the
baby grows
well. You may need to apply white soft paraffin or Vaseline to the baby’s
lips and to
your nipples to minimise the friction on cheeks, lips and gums which can
occur when
the baby nuzzles against your breast during rooting and as he suckles. Even
if your
baby has mouth blisters, this does not necessarily rule out breast feeding.
Here are a few tips which mothers of EB babies have found helpful :-
• Put the baby to the breast often and let him suckle as long as he wishes.
• Allow plenty of time so that neither of you feels rushed.
• If your breasts are very full, express a little milk first so that the
baby does not
choke when the milk comes down.
• Make sure that the baby is properly latched onto the nipple and not askew.
• Mouth blisters usually burst during suckling. If not, burst them as
advised by the
EB Nurse Specialist.
If your baby's mouth is too sore for him to suckle, or if he tires easily,
you could
express your milk and feed it from a dropper or spoon, or a
specially-manufactured
bottle and teat such as the Haberman Feeder® (Athrodax Healthcare
International,
Ross-on-Wye, UK). The teat is specially shaped, and is less likely to damage
the
gums than normal teats, it also contains an internal valve which allows
control over
the flow of milk, helping a baby with a weak suck to receive a good flow of
milk. The
nutritional content of your breast milk can be increased in various
different ways; the
dietitian can discuss which is best for your individual situation.
9
Alternatively, the hole in a conventional teat can be enlarged using a
sterile needle or
by making a small cross cut with a pair of sharp scissors. Sterilise the
teat before
use. Take care that the faster flow of milk does not cause coughing or
choking.
What if you don't breast feed ?
Because EB babies often have increased nutritional requirements, breast milk
alone
may not be enough to promote satisfactory growth. If this is the case, the
dietitian
will discuss with you the best feeding plan for your baby. It may mean
adding
nutrients to your expressed breast milk (EBM), giving him some bottle feeds
in
addition to your breast milk, or it may mean your stopping breast feeding
and giving
fortified ready-made feeds instead. (See section on "Weight gain and
fortified
feeds".)
If you choose not to breast feed, for whatever reason, do not feel that you
are letting
your baby down. He will derive very satisfactory nutrition from one of the
babymilk
formulas which have been manufactured to resemble human milk as closely as
possible.
If your baby is bottle-fed and his mouth is very sore, sucking may be made
more
comfortable by enlarging the hole in the teat or by using a Haberman Feeder
(see
previous section). Do this with a needle, or make a small cross-cut with
sharp
scissors.

http://amicis.net/homecare/treat/nutrit.htm

The following problems may occur in breastfeeding:

  • Blistering in the mouth if the baby is given the breast incorrectly

Make sure the baby holds the nipple straight in its mouth

(and not `at an angle').

• Blisters in the mouth

These usually burst when sucking. If they do not burst spontaneously, open
them with a needle.

• `Full' breasts

Squeeze a little milk out of the breast so the child does not choke.

• Not taking enough time for feeding

Give the baby the breast regularly and let it suck as

long as it wants. Take plenty of time for feeding so the

  mother and child do not feel rushed.

  If the mouth of the infant is too painful to suck or if the infant is too
tired (or becomes too tired) consider expulsion of milk and feeding the
infant with a little spoon or pipette.
Bottle-feeding

In (case of a painful mouth and when sucking the teat causes blisters)
bottle-feeding the hole in the teat may be enlarged and a softer, more flat
teat may be used. An example of this is the Milupa Orthodontic®.

When bottle-feeding, it is useful to moisturize the teat before feeding with
cooled off boiled water to prevent the teat from sticking to the blistered
areas.

Up until six months, all infants can be adequately fed by just breastfeeding
or bottle-feeding. When the infant is thirsty, boiled water which has been
cooled off until it is at room temperature may be given.

http://www.epidermolysis-bullosa.com/Daily-life/Feeding/Breastfeeding

The mouth of babies with EB can be extremely fragile. Some babies an drink
more easily than others: babies with blisters and lesions in the mouth may
have difficulty latching onto the breast or the bottle.

Mothers may decide to express their milk to feed the baby. It is preferable
to choose a bottle with a nipple shaped like an X or Y: this is the best
shape for children with a fragile oral mucous membrane because the baby can
control the pressure.

The nipple must always be moistened before use, otherwise it will stick to
the lips and risks causing damage. In more difficult cases, syringes and/or
pipettes may allow the infant to be fed less painfully and more effectively.


Certain instances of blistering inside the mouth prevent the child from
feeding: in this case, the infant must be fed via a naso-gastric tube until
the blisters disappear. Once they have healed, normal feeding can
recommence.

For the type of EB that affects mucous membranes, feeding takes longer.
Anti-regurgitation treatment may be prescribed to protect the digestive
membranes from any acid reflux.


> Date:    Fri, 6 Aug 2010 15:39:26 -0400
> From:    Nikki Lee <[log in to unmask]>
> Subject: epidermolysis bulosa
>
> Dear Friends:
>
> The pediatrician caring for this newborn has said that she may not
> breastfeed, and will have to be fed with a Haberman feeder.
>
> This makes no sense to me....seems like a Haberman, that only works by
> being
> chewed, would cause more mouth trauma than nursing on a soft, malleable
> human nipple.
>
> Does anyone have any experience or references for this sad situation?
>
> warmly,
>
> --
> Nikki Lee RN, BSN, Mother of 2, MS, IBCLC, CCE, CIMI
> craniosacral therapy practitioner
> www.breastfeedingalwaysbest.com
>
>

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