Dear Trish:

Thank you so much for sharing your story. You have struggled against all
odds to help your child make it to where he is today. You deserve
recognition for all of the effort, time, and energy you have spent doing
so. I can only imagine how very difficult, frustrating, and frightening
this experience has been for you. Your right to grieve the loss of a
breastfeeding relationship with your child from the time of his surgery
until today deserves acknowledgment and support. Your desire to try to
teach your son to breastfeed deserves appreciation, too.

I wish I could offer suggestions that I'm sure would help. But, as you
know, it is a complex situation and you have been in a lot of uncharted
territory. Still, here are a few thoughts and questions:

1. What worked before--the last time that you slowly weaned him from the
tube to the breast? How long did it take? How did you keep coping through
the difficulties? Your own experience and expertise may offer some ideas
for what might work now.
2. Have you been able to connect with other mothers who have managed to
transition babies to the breast--regardless of the reason for the
difficulties? Even if the reasons are dramatically different, from adoption
to a congenital disorder, their insights, ideas and companionship may be
very helpful. Perhaps LACTNET colleagues can help connect you with mothers
they have worked with if you are in need of such support. And what about
LLLI's own collection of Leaders with experience in special areas?
3. Older nurslings have been known to learn how to nurse--sometimes even
when they have never breastfed before. See, for example, "Nursing Julia: My
Supreme Challenge" by Darillyn Starr available online at
http://www.lalecheleague.org/NB/NBSepOct93p135.html. In this article, Ms.
Starr describes her experience of teaching her adopted daughter, who was
six months old and being fed largely through a tube at the time of the
adoption, to nurse. It took her over four months to do so. Creativity and
perseverance are notable themes in her article. What ought not work
sometimes works and what ought to work sometimes doesn't. Perhaps something
there will spark an idea that has not yet occurred to you or your health
care team.
4. Regardless of the exact outcome, your goal seems, in part, to help
normalize feeding for your son as much as is possible. Since it is
biologically normal for a 20-month-old to be breastfeeding, the OT's view
that 'to "go back" to "sucking" would actually be going backwards because
he drinks from a cup so well.' seems misguided. Further, human
development--from the physical to the emotional--is consistently grounded
in the development that occurred earlier. A good foundation in suckling, if
possible to develop, is more likely to be conducive to further development
than it is likely to be harmful to further development. Is there a more
supportive OT that you could work with instead?
5. Regardless of the exact outcome, your efforts to recreate aspects of
breastfeeding are appropriate. "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." (Good Mojab 1999; online at:
http://www.lalecheleague.org/llleaderweb/LV/LVDec99Jan00p123.html). Your
son's sleeping with your breast next to his face is a wonderful example of
your recreating an aspect of breastfeeding for him. That your son is
"happy, attached, secure, and thriving" are signs that you are meeting his
needs even though breastfeeding has not happened in the way that it happens
for most mothers and babies.
6. What resources do you have available to help your son recover from the
emotional trauma that these chronic health issues have caused? Is there a
mental health professional (fully supportive of breastfeeding) on your
son's health care team? If not, can one be added? Emotional stresses are
commonly manifested physically. So emotionally-based therapies often result
in improved physical outcomes.
7. Redefining normal may be helpful. Given your son's past physical
challenges and experiences, it is normal for him to be where he is now.
Responding with oral aversion, not wanting to be touched, having feeding
challenges, etc. are normal reactions to abnormal circumstances. Your
efforts have gradually changed his normal toward the direction of normal
for most little ones. If more change turns out to not be possible, your son
will still be normal in comparison with himself--which is the only fair
comparison that can be made.
8. What resources do you have available for your own emotional support?
This is hard, hard work. It is very painful for a mother to wish so much
that she could share something with her child that she knows is so good, so
appropriate, so precious--breastfeeding--but that most of society
completely fails to appreciate, much less provide support for. The limbo of
not knowing how things will turn out, the uncertainty of whether or not you
should keep trying to teach him to breastfeed, the lack of resources
specific to your situation, the pioneering of so many things, the wondering
if you will ever make it through this, etc. are exhausting and very
difficult to experience. It can be difficult to find the support you need
in the way that you need it right when you need it. Most people do not
understand the simple fact that chronic situations must be dealt with
chronically--there's no "getting over" them because they are ongoing.
Chronic grief is a normal and healthy reaction to an ongoing situation
involving loss (loss of a sense of normalcy, security, certainty, etc.). My
article, Congenital Disorders: Implications for Breastfeeding
(http://www.lalecheleague.org/llleaderweb/LV/LVDec99Jan00p123.html) and my
LC Unit, Congenital Disorders in the Nursling, provide information and
support for the emotional experience of challenging situations like yours.
Resources (from organizations to books and articles) are included in these
publications. I hope you will find ways to tenderly care for your own needs
while you are working so hard to tenderly care for your child's.
9. What about adding another IBCLC to your local team--not because who you
are working with already isn't good enough, but because--like with
LACTNET--more heads are simply better than one? Sometimes being able to sit
together and brainstorm results in far more ideas than one person can
generate on their own. One idea leads to another and to another.

I hope something here is helpful. May love and support surround you and
your son as you find your way through this together.

Cynthia

Cynthia Good Mojab
Ammawell
Email: [log in to unmask]; Web site: http://home.attbi.com/~ammawell

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