Dear Pam:
There are currently 940 types of dwarfism and dysplasia listed in the
Centralized Dwarfism Resources website at www.dwarfism.org. Different types
have different symptoms and health issues. Does this mother know for
certain that the type of dwarfism her baby has is achondroplasia? An exact
diagnosis can help her find information on symptoms and health issues might
suggest which risks of formula feeding are particularly problematic for her
baby. By breastfeeding, the mother is providing the foundation of the most
normal development that her child can experience. Formula feeding and
premature weaning will only add health risks to any existing risks that
come with her baby's diagnosis of dwarfism. As I browsed through the
information presented on the website of Little People of America
(http://www.lpaonline.org/resources_dwarftypes.html), I saw several
potential health problems that could impact breastfeeding or that could
make breastfeeding that much more important for a baby with dwarfism: apnea
(see Brian Palmer's website at
http://www.brianpalmerdds.com/apnea_commentary.htm for information on how
not breastfeeding increases the risks of apnea), cardiac, respiratory,
urinary-tract, and central-nervous systems abnormalities, etc. Corrective
surgeries may be required at some point, making the lack of anti-infective
and anti-inflammatory components in formula of even greater risk for a baby
with dwarfism. I am glad to hear your report that the baby has no
difficulty with nursing!
The information I found on achondroplasia
(http://www.med.jhu.edu/Greenberg.Center/achon.htm) includes increased risk
of middle ear infections (making the additional risks of middle ear
infections due to formula feeding that much more problematic), dental
crowding due to a small jaw (making the additional risks of malocclusion
due to bottle feeding that much more problematic--see Brian Palmer's
website), and apnea (again, see Brian Palmer's website).
On good days, it can be extremely difficult to make changes in our
relationships with significant others. On profoundly challenging days, such
as those experienced by mothers just learning how to be the parent of a
child born with a congenital disorder, making such changes can be
absolutely overwhelming. This mother's "depression" could be part of her
adjusting to this unexpected and challenging life event: feelings of
depression are a normal and healthy part of grieving the loss of her
expected child and her expected life. However, someone needs to be keeping
an eye on how she is doing. Perhaps there is a mental health professional
that could be consulted--preferably one with experience in helping parents
coping with the chronic grief that can come with exceptional parenting?
What local support and information organizations might be able to provide
help to the mother and family? I list several resources in my two
publications on congenital disorders that might be helpful to the mother.
And my article, "Helping mothers create breastfeeding allies," might
provide some ideas about how to engage the woman's father in providing more
breastfeeding support--even if that support is "just" being neutral rather
than negative toward breastfeeding.
Good Mojab, C. Congenital disorders in the nursling. Unit 5. Lactation
Consultant Series II. Schaumburg, IL: La Leche League International, 2002.
Congenital disorders: Implications for breastfeeding. Leaven, Vol. 35 No.
6, December-January 2000; pp. 123-128. (Accessible online via the
publications page of my website.)
Helping mothers create breastfeeding allies. Leaven, Vol. 37 No. 6,
December 2001-January 2002, pp. 123-127. (Accessible online via the
publications page of my website.)
Also, I highly, highly recommend the book: Building the Healing
Partnership: Parents, Professionals, and Children with Chronic Illnesses
and Disabilities by Patricia Taner Leff and Elaine H. Walizer, 1992.
I hope that this mother's needs will be met as she begins to find her way
on this new and challenging path. And I hope that yours will be, too, as
you cope with your divorce and its painful aftermath.
Best wishes,
Cynthia
Cynthia Good Mojab, MS, IBCLC
Ammawell
Email: [log in to unmask]
Web site: http://home.attbi.com/~ammawell
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