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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