Katherine Dettwyler wrote: <<If you want to push the envelope in favor of
breastfeeding, perhaps you could read up on the Mother's Milk Bank in
Austin, Texas --started by neonatalogists to provide mother's milk to all
premature and critically ill babies. They also report some mothers who
refuse to express breast milk/breastfeed, and some mothers who can't
because of distance, their own illness, or whatever. None-the-less, all the
critically ill and premature babies get breast milk once they are able to
tolerate foods by mouth.

You could then do an in-service for the neonatalogists and NICU nurses (and
parents) about how critically important it is not to use formula.>>

Excellent suggestions.

Social environments in which formula feeding is the norm for healthy,
full-term babies contribute to the creation of hospital environments in
which it may sometimes seem impossible and even unimportant to work toward
protecting, promoting, and supporting breastfeeding for babies who are born
with congenital disorders and/or who are hospitalized due to illness or
injury. We cannot deny the very real challenges that may be faced by
mothers, babies, families and their health care providers in such
situations. However, it is often impossible to completely tease out exactly
what prevented (or is preventing) breastfeeding from happening in any given
situation involving health concerns for the child. Is it personal and
cultural beliefs and attitudes that are poorly matched with biologically
based needs and their institutionalization in parenting and health care
practices--a highly likely situation in many societies (Good Mojab 200)? Or
is it that physiologically based anomalies are posing major challenges to
breastfeeding or would preclude breastfeeding no matter what the
environment? Of course, when both types of obstacles occur together, the
situation is that much more challenging.

The mothers that I have worked with and who have shared their stories with
me as part of my research on breastfeeding children born with congenital
disorders frequently state that they felt empowered by breastfeeding and/or
by providing their expressed milk for their child. It was one thing they
could do--that the health care providers could not--to help their child in
a profoundly meaningful way. They also frequently state that they received
insufficient breastfeeding support and/or inaccurate breastfeeding
information from their health care providers for breastfeeding in the
hospital setting (or at all). (Please note: the mothers in my research have
also reported health care providers who did provide excellent breastfeeding
support and information (and they were MUCH appreciated); however, this, so
far, has been the exception.) When mothers and health care providers have
up-to-date information on the risks of formula feeding, particularly for
little ones who are sick and/or who have one or more compromised organ
systems, they are better able to make informed decisions. With this
information, the family-healthcare provider team is also often more able to
find the motivation and creativity needed to persevere with breastfeeding
when the going is rough.

Bottle-feeding has particular risks for babies with congenital heart
disease, for example, that parents have the right to know about:

"For example, babies with congenital heart disease fatigue easily. Bottle
feeding had been advised for such infants in the past because it was
thought to be less stressful and easier (Coffey 1997). Mothers may still
encounter this advice today. However, research has shown that breastfed
infants do not experience decreased oxygenation effects during
breastfeeding or in the postfeed period (Meier 1988; Marino, O'Brien, & Lo
Re 1995), though bottle fed infants do. Fatigue, thus, is better met with
breastfeeding than with bottle feeding. It may be helpful to use a
semi-upright position, take short breaks during breastfeeding, or
supplement with human milk using a feeding-tube device or via gavage
feedings if fatigue temporarily makes it difficult for the baby with
congenital heart disease to meet all nutritional requirements at the breast
(Coffey 1997). (Good Mojab, LC Unit, in review)"


As another example, formula feeding has particular risks for babies with
Down syndrome:

"The increased respiratory secretions associated with Down syndrome result
in a greater risk of chest and sinus infections. Given that breastfeeding
protects against respiratory illness and results in less serious
respiratory illness and fewer hospitalizations for respiratory infections
(Beaudry, Dufour, & Marcoux 1995; Cunningham, Jellife, & Jellife 1991;
Lopez-Alarcon, Villapando, & Fajardo 1997), human milk is of particular
importance to the child with Down syndrome. (Good Mojab, LC Unit, in
review)"

For those situations in which breastfeeding in the usual way is not
possible, there are many things that can be done to recreate at least some
of the sensory experiences of breastfeeding:

"Breastfeeding is more than nourishing a baby with his mother's milk. The
baby with a congenital disorder will be aware of as many aspects of his
mother as his senses permit: the sound of her heart and her voice, the
smell of her body, the feel of her breathing, of her skin, and of being
held in her arms, the taste of her milk, the sight of her face, and,
perhaps most importantly, the knowledge of her presence. When a baby is
unable to fully or partially breastfeed for any reason and for any length
of time, his mother may still be able to recreate many of the sensory
experiences of breastfeeding during supplemental feedings, such as by being
the only one to feed her baby, holding him for all feedings, resting his
cheek on her bare breast during feedings, maintaining eye contact, stroking
and talking to him, and switching sides during feedings.  If breastfeeding
is contraindicated or must be limited, and a baby's sucking needs are not
sufficiently met during feedings, his mother can also hold him any time he
is offered a finger, knuckle, or pacifier to suck. In these ways, the
mother can recreate many of the aspects of breastfeeding that contribute to
the nurturing of her baby's physical, emotional, and social development.
(Good Mojab, 1999)"

Accurate information is critical for both parents and health care
providers. Yet it can be very difficult to come by--much less effectively
use--in times of crisis. That's one reason why the kind of in-services for
professionals suggested by Kathy are so important. It's also why health
care providers need specific training and knowledge in the emotional
support of families whose children have special needs. Such training and
knowledge facilitates grieving and problem solving (Good Mojab 1999). For
example, if a mother--understandably experiencing a high level of
stress--states that she has no milk when she pumps, breastfeeding does not
have to immediately be abandoned. Many questions can be asked: What kind of
pump is she using? Is it working properly? Where is she using it (does she
have any privacy, is she comfortable,...)? Is she using it correctly? What
can be done to reduce her stress? What hospital policies and procedures can
be changed to better meet her and her family's needs? How can she and her
baby have more physical contact? What psychological help can she be
provided to help her relax enough to elicit her MER...? If parents and
health care providers do not have the information that they need about the
importance of breastfeeding and the risk of formula to well and sick babies
and children, these questions are much less likely to be asked--and
solutions to the challenges faced by mother-baby pairs with health concerns
are much less likely to be found.

There are many resources for anyone wanting to do more to support, protect
and promote breastfeeding (in usual and unusual ways) in situations
involving hospitalization and/or congenital disorders. Here is just a small
sample (many more resources are listed in the reference sections of these
resources):

Coffey, P. Breastfeeding the infant with congenital heart disease. In L.
Wellman, K. Damus, and M. Freda, Eds. Breastfeeding the Infant with Special
Needs. New York: March of Dimes Birth Defects Foundation, 1997.

Dowling, D. Breastfeeding the preterm infant. In L. Wellman, K. Damus, and
M. Freda, Eds. Breastfeeding the Infant with Special Needs. New York: March
of Dimes Birth Defects Foundation, 1997.

Good Mojab, C. Congenital disorders: Implications for breastfeeding.
Leaven, Vol. 35 No. 6, December 1999-January 2000, pp. 123-28. Full text
available online via:
http://msnhomepages.talkcity.com/SupportSt/ammawell/publication.html

Good Mojab, C. The cultural art of breastfeeding. Leaven, Vol. 36 No. 5,
October-November 2000, pp. 87-91. Full text available online via:
http://msnhomepages.talkcity.com/SupportSt/ammawell/publication.html

Good Mojab, C. Congenital disorders in the nursling: Implications for
breastfeeding and lactation consulting. Lactation Consultant Series II.
Schaumburg, IL: La Leche League International (in review; publication
expected in the next few months).

Good Mojab, C. Nurslings with congenital disorders. New Beginnings (in
review; publication expected by the end of the year 2001).

Leff, P. and Walizer, E. Building the Healing Partnership: Parents,
Professionals, and Children with Chronic Illnesses and Disabilities.
Brookline Books, 1992.

Landis, J. Supporting the human-milk-feeding mother. Leaven, Vol. 37 No. 1,
February-March 2001, p. 3-6. Full text available online at:
http://www.lalecheleague.org/llleaderweb/LV/LVFebMar01p3.html

Popper, B. The hospitalized nursing baby: Meeting the needs of mothers,
babies, and families in health care settings. Lactation Consultant Series
II. Schaumburg, IL: La Leche League International, 1998.

As a final thought, I don't think that I can ever realistically become
fully up-to-date in the dynamic field of breastfeeding and human lactation,
because new research is published every year that questions or corrects old
information, practices and theories. Every time a mother returns a
questionnaire on her experience breastfeeding (or attempting to breastfeed)
a child born with a congenital disorder, I learn something new. Every time
I work with any breastfeeding mother, I learn something new. My job is
simply never done. I expect this to continue throughout my lifetime.

Warmly,

Cynthia

Cynthia Good Mojab, MS Clinical Psychology
(Breastfeeding mother, advocate, independent [cross-cultural] researcher
and author; freelance writer; LLL Leader and Research Associate in the LLLI
Publications Department; and former psychotherapist currently busy
nurturing her own little one.)
Ammawell
Email: [log in to unmask]
Web site: http://msnhomepages.talkcity.com/SupportSt/ammawell

             ***********************************************
The LACTNET mailing list is powered by L-Soft's renowned
LISTSERV(R) list management software together with L-Soft's LSMTP(TM)
mailer for lightning fast mail delivery. For more information, go to:
http://www.lsoft.com/LISTSERV-powered.html