Ahhh, by now most of you know that I only sit down to write to LACTNET
when I'm emotionally moved by a topic ... which is probably why I've
come to associate writing to LACTNET with crying and a pile of spent
tissues on the floor when I press send. *sigh*
Laurie asked whether we should be intervening sooner when we suspect
hypoplasia. I'd like to contribute some insight.
My very best friend has hypoplasia, as does another very, very close
(the emergency contact for my kids in school if I'm unreachable!)
friend. I've supported both of them in breastfeeding but I've also
been privy to their tears, frustrations, and emotional states through
the processes.
I'll try and keep this brief and just say that both of them wanted to
know. They wanted to know that their breasts had visual markers of
something abnormal. They wanted to know breastfeeding might not go
well but they should try anyway because it also might be just fine.
The one with PCOS wanted to know her syndrome may or may not have an
impact on her ability to breastfeed, especially given her very
distinctive, "textbook" hypoplastic breasts. They wanted to know they
had competent, informed support and they wanted to know they had done
everything they could to make milk for their babies. And, in the end,
they wanted to BREASTFEED regardless of whether the milk was coming
from their breasts, a tube taped to their nipples, or a little of both.
Now, I'm well-known for being honest. Brutally honest, some might
say. Some might also say my honesty isn't my strongest feature. :)
But ... I have a few ideas about how to talk to mothers in this heart-
wrenching situation. I respectfully assert that it is not ethical to
wait and see. I asked Heather, my best friend, tonight what she
thought (as she was nursing her 2nd baby, 27 days old today) what she
thought. She got agitated, and asked me, "would a doctor who suspects
cancer "wait and see" without disclosing his theories to the patient?
Especially if there might be behaviors the patient could practice to
maximize her chance for a positive prognosis?"
I think it's our obligation to tell these moms what we know, but tell
them everything! Tell them breastfeeding might go just fine. Give
them statistics. Tell them most mothers, even some with physical
characteristics like theirs, go on to bring in a full milk supply but
that their breastfeeding management might have less room for error
than another mother's. Tell them what, exactly, about their breasts
concerns you. Explain what happens in those first few days as nipple
stimulation makes prolactin receptors and the brain makes hormones and
the more of this, the better! Ask them about their pregnancies (even
better if we see the mothers prenatally but I know that is rare) --
"did you feel your breasts change? When? What did it feel like?" I
ask all mothers how they feel about their breasts. "Do you feel your
breasts look like others you've seen?" The answers I've gotten have
amazed me and given me so much more information than I could have
gotten by mere speculation ... confessions of implants, locker room
embarrassment, etc. Tell them what to look for as signs that things
are going well and what to be concerned about and how to fix it in a
way that supports breastfeeding ... FEED THE BABY but protect that
milk production. Teach mothers to recognize swallowing and signs of
milk transfer. Write up a report for the doctors and for the nurses
and for the pediatrician. It's so important they're in the loop *but
that the mother has all of the facts.* A mother who isn't given all
the facts will likely do whatever she has to to fill in those blanks
and her other resources might not be as good as you.
Offer emotional support. For my two friends, breastfeeding was 100%
part of their visions of motherhood. Heather was thankful she found a
way to BE a breastfeeding mother once we figured out exactly what was
going on (I wasn't yet an IBCLC but gave her everything I had access
to at the time). My other friend needed ongoing therapy as she
mourned the loss of the breastfeeding relationship. She felt like a
leper with other attachment parents when they sat nursing their babies
and she pulled out a bottle to feed her baby, who was sick non-stop
with ear infections and whose diapers smelled worse than the others.
She made milk for her 2nd baby and supplemented with milk she obtained
from various donors ... and nearly 4 years later STILL feels like a
breastfeeding mother because her pre-schooler won't go to bed without
"nursies."
There is an article I wrote for La Leche League on the topic of
supporting mothers with mammary hypoplasia/IGT (it is available on the
La Leche League website and, while written for La Leche League
Leaders, is suitable for healthcare providers and mothers).
Additionally, Heather's story is being posted online this week, I'm
told, on the Best for Babes blog. This is a topic for which I have
great passion. Laurie, I wonder whether the population of mothers you
are working with was either exposed to abnormal levels of dioxin when
they were in utero themselves, or if perhaps you work among a lot of
mothers who got/stayed pregnant with assistance? I know we are seeing
more IGT than the statistics once predicted but I also think we are
finding ways to give these mothers OPTIONS (so vital ... many may
ultimately choose not to breastfeed at all but isn't it lovely when
they make that choice themselves and don't feel the choice was forced
upon them because of lack of support or knowledge?).
Please feel free to email me or post here to the list if you'd like to
discuss further with me, I am more than happy to engage on this
topic. I know my opinion runs counter to some presented here but
hopefully this side of the story is somewhat unique and helpful.
--Diana in NY
Diana Cassar-Uhl, LLLL, IBCLC, best friend to breastfeeding mother
with IGT (and yes, I'm crying!)
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