Since the vast majority of mothers and babies are physiologically capable
of breastfeeding well, most breastfeeding problems will have relatively
simple origins and relatively straightforward solutions: a better latch is
needed, some mother-to-mother support would help, etc.  (I am, of course,
aware that the complexities of culture can make what should have been
simple and straightforward incredibly challenging!) However, we must always
remain aware and alert that breastfeeding difficulties can be a sign that
something out of the ordinary is going on. Congenital disorders are not as
rare as some might think.

As I wrote in my article, "Congenital Disorders: Implications for
Breastfeeding" (reference below), "In the United States, one out of every
fifty newborns is born with a significant congenital anomaly (Cohen 1984,
as cited in Lemons & Weaver 1986). Babies born with a congenital disorder
often show obvious symptoms and signs associated with congenital
malformation, display neurological impairment, and/or manifest the
appearance of a specific syndrome (Rubin 1975). The majority of children
born with special needs will be identified at birth (Lemons & Weaver
1986)."

I also wrote, "The majority of mother contacts with La Leche League
probably occur during the early weeks of mothering. In societies where
breastfeeding is not the cultural norm, such as the United States, learning
to breastfeed is a challenge for many mothers. However, the mother of a
baby born with a congenital disorder learns to breastfeed while also
learning to cope with her child's exceptional needs. When a mother first
contacts the Leader, her baby may already have been diagnosed with a
congenital disorder or she may only have vague misgivings that "something
is not quite right." Breastfeeding difficulties can be among the first
symptoms that suggest a baby has special needs.

Diagnosis is often experienced as a long and difficult process. It is not
uncommon for several congenital disorders - differential diagnoses - to be
under consideration for a time. While some disorders may be immediately and
accurately diagnosed (e.g., cleft lip), others, especially rare disorders,
may take years. Approximately one out of three people with a rare disease
will not be correctly diagnosed for one to five years; one out of six will
wait for over six years (National Organization for Rare Disorders 1989). A
delay in obtaining the correct diagnosis will delay the information and
support the mother needs to care for her baby and can negatively impact her
ability to access appropriate medical care as well as specialized
breastfeeding support."

Through my research on this topic, I know many mothers of children with
congenital disorders who experienced frightening, exhausting, frustrating
and dangerous delays between expressing their concern and getting a
referral to the appropriate specialist. (I've included many such situations
in my chapter on congenital disorders in the nursling that will be
published soon in LLLI's Lactation Consultant Series II). If an LC is
concerned that something unusual is going on but feels she's out of her
area of expertise, she can always consult a specialist herself (genetic
counselor, geneticist, OT, neurologist, etc.) to inquire what an
appropriate next step might be. Lactation consultants provide mothers (and
their children) an invaluable service when they listen to a mother's
concerns and facilitate referrals as needed. It can be *extremely*
difficult to find the right information and support. I list a variety of
resources for mothers in both my article and the upcoming LC Unit (the LC
Unit's list is expanded from the article's list).

Reference: Good Mojab, C. Congenital Disorders: Implications for
Breastfeeding. LEAVEN, Vol. 35 No. 6, December 1999-January 2000, pp.
123-28; online at:
http://www.lalecheleague.org/llleaderweb/LV/LVDec99Jan00p123.html:

Warm wishes to all mothers of nurslings with congenital disorders--and to
the LCs helping them find their way,

Cynthia

Cynthia Good Mojab, MS Clinical Psychology
Ammawell
(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.)
Email: [log in to unmask]
Web site: http://msnhomepages.talkcity.com/SupportSt/ammawell

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