The XL Glass shield is a blessing to women who truly can't pump
with anything
else.
I recently helped a mom pump for a bb w/ complete cleft palate.
She's still
pumping at almost a year!  She truly needed the XL shield and has
purchased 3
(yes Three !) because they break so easily.   She is arguing w/
her insurance
co to pay for them as special equipment.

*****One of the things that I do when I am talking to a new mom
with a special needs baby is to help her identify any and all
avenues of financial assistance that might be available to her.
I also offer tips on how to work with the insurance companies.
Just a couple of tips that you might try in this situation, for
working with the insurance.  First, get documentation from the
baby's plastic surgeon as to the extent of the cleft, get this in
writing, on letterhead and signed.  Keep the original (this is a
very useful piece of paper!) and send a copy of it.  If the baby
is seeing a cleft team (this is the recommended setup for cleft
affected babies, but there are still a few out there that are not
working with a team) then the baby will have seen a speech
pathologist at some time in the first few visits that they made
when baby was newborn, have that slp provide documentation as to
the fact that baby is not capable of feeding directly at the
breast (you will also need to provide this documentation in
regards to the baby's capabilities) and send a copy of that to
the insurance co.  Then, the IBCLC give mom documentation that
the baby is unable to feed at the breast and that pumping is
required for baby to get the milk that s/he requires (put a few
reasons why bmilk is so important, reasons that the insurance co
would see as necessary for the short term, including things like
fewer problems with illnes/infections etc) and that, due to the
size and shape of mom's breasts, the xl glass cone is required
for said pumping.  You might put that these are easily breakable
and that more than one might be required...  All of this should
be copied and the copies sent to the insurance company (I stress
that copies should be sent, because these things are frequently
lost.)  Also, it is common that these need to be appealed at
least a few times and that new copies need to be sent out.
another avenue that mom could take to get what she needs is local
resources that might be available to them.  For instance, the
local MR/DD board bought me a $600 pump and paid for the rental
for 6 months before I was given the money to buy it.  Once my son
was determined to be at risk of developing a developmental delay,
he was enrolled in early intervention classes and they helped me
with all kinds of things like this to facilitate his
development.  I just had to ask for it and let them know what I
needed, and a "hospital" quality breastpump was one of them.  I
suggest asking at the local health department, ask for a nurse
that helps in assessing young children and babies for
developmental delays or entrance in an EI program, tell her what
is needed and for whom to contact for help, she should be able to
give you some names and suggestions.  When I was just starting to
breastfeed my son, I could have gotten formula for free (we
easily qualified for WIC) but i was stubborn enough to want to
keep trying it.  Not all moms that are in this type of a
situation are going to be as stubborn, so they can definitely use
all of the help that they can get!  Especialy when most of the
medical establishment is going to be telling her to not bother
and just formula feed.  I hope that the above mom is told that I
*really* am proud of her and admire her.  :)
Hope this helps some,
Vickie