Cynthia Payne wrote about the mother whose 3-month-old baby has been
exclusively breastfed until being diagnosed with Long Chain Fatty Acid
Disorder.

The FOD (Fatty Oxidation Disorders) website (http://www.fodsupport.org/)
offers information and support on a variety of fatty oxidation disorders,
though I did not see "Long Chain Fatty Acid Disorder" listed in these exact
words. This website talks about the restriction but not elimination of fat
in the diet, leading me to wonder if some human milk and/or breastfeeding
still may be possible for this baby. The website also describes research
about DHA supplementation in children with fatty oxidation disorders
(http://www.fodsupport.org/dha.htm). Human milk contains DHA. (I could not
find "Protegen" by that spelling in a search of the Internet.)

My questions include:

1. What is the exact name of the disorder or does it have any synonyms?
This may help the mother locate information.
2. How much fat can this baby consume?
3. What amount of human milk might be permitted?
4. What amount of "skim" human milk might be permitted? (Since long chain
fatty acids are contained in the fat portion of human milk, could the baby
at least have some "skim" milk from her mother--by letting the fat rise to
the top of refrigerated milk. Or perhaps trying to decrease the fat content
in the milk by increasing the intervals between pumpings or feeding would
offer an option. Page 128 of Breastfeeding and Human Lactation by Riordan
and Auerbach includes a description of a study showing that the fat
composition of the milk changes with different patterns of
breastfeeding--the amount of fat decreases with longer intervals between
feedings. Could the mother's milk [skim or not] be analyzed in a lab to
determine the fat content and then the mother and doctor could work
together to determine an acceptable amount. At least the baby would still
have access to some amount of the other ingredients in human milk that
promote normal health and development.)
5. Would the mother have continued to breastfeed if the baby had not been
diagnosed with this disorder?
6. Is the mother willing to continue pumping even if the baby is only able
to consume a portion of her breastmilk?
7. How sick is the baby? Might she die? (The mother states: "if" we leave
here with her... ) What support is this mother (and her family) getting
emotionally (personally and professionally) and practically (meals for the
family, care for other children, etc.) during this crisis?

The mother (and IBCLC) might find the resources and information included in
my article, "Congenital Disorders: Implications for Breastfeeding,"
helpful. For example, has she contacted NORD (National Organization for
Rare Disorders), MOD (March of Dimes) or MUMS (Mothers United for Moral
Support) yet? Full contact information for such resources is listed in my
article. It can be accessed directly from the LLLI website
(http://www.lalecheleague.org/llleaderweb/LV/LVDec99Jan00p123.html) or from
a link in the breastfeeding section of the publications page of my website
(http://members.home.net/ammawell).

Warmest wishes to this mother and baby--and to their family,

Cynthia

Cynthia Good Mojab, MS Clinical Psychology
(Breastfeeding mother, advocate, independent [cross-cultural] researcher
and author; 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://members.home.net/ammawell

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