Re: the recent post about someone working with a developmentally delayed
mother / entire family with premature triplets:

Boy, my heart goes out to all in that situation! Takes me back to the bad
old days when I worked in the hosp., when women like this were rarely even
given much of a chance to parent their babies, let alone BF them. Like
Jack's Ulysses phenomenon, one thing inevitably led to another in these
cases, starting with a call to the Social Work dep't "to arrange appropriate
support" for the family and ending with the babies being placed in Foster
Care "for their own safety and well-being". You know, I've never shared with
anyone what being part of that system was like for me, and I won't start
here because it goes way off-track, but my heart still aches when I think
about the poor souls I worked with.

Some of the things I've learned about working with families like this:
1) work closely with the other agencies that will be in the home - Public
Health nurses, all the Special Needs programs involved, WIC, the peds,
everyone. You can arrange a case management meeting at the hospital before
mom goes home, and you can make a huge difference by really "networking"
with the best people available in each of the involved agencies.

2) Be real specific with these moms - this is not the place for the long
explanations of options and the philosophical underpinnings of each. This is
where you make basically a star chart, with boxes to check off or whatever
is appropriate for this family. It's also a case where scheduling MAY be
OK - depends on the particular style of "developmental delay", but some moms
I've worked with do much better knowing that they need to feed Baby X at
such-and-such times.

3) Determine whether the mom (and/or whoever else is in the household with
them) can tell time, and has a sense of what time means. I say this after
experience with a very delayed mom who could *tell* me she needed to feed at
certain times, and could recognize those times on the clock, but essentially
had no idea of time and so couldn't make reasonable adjustments. If she
missed a specific time for a feeding by, say 1/2 an hour, she couldn't just
then feed the baby as soon as she noticed the ommision, but would just wait
till the next scheduled time came around. This was scary, because she also
didn't really respond to the baby's cues the way we would expect - if the
baby cried & rooted around after she had missed a feed, for example, the mom
might say "I think he wants some orange juice" (because she wanted some
orange juice herself? Impossible to say) This was REALLY scary - the upshot
was that she had no sense of time and wasn't able to interpret her baby's
cues appropriately, and this baby ended up dying in the mother's care
because of these "gaps", and her next baby was taken away from her before
she even left the hospital. So, so sad!

4) Don't get too fixed on the breastfeeding thing here - remember rule #1:
feed the baby!  While BFing is certainly easier, cleaner, etc. than mixing &
measuring& sterilizing ABM if it's going well and works best for mom, I
think you need to be flexible and attentive to what's working & what's not,
and willing to compromise on the ideal for the sake of the possible.

I'm turning into a pompous windbag here - I'll stop, and send you all my
best vibes! Keep us posted, though - I lost at least 3 hrs. of sleep last
night thinking about these folks, and another 3 re-living horrendous stories
from past experience.

Cathy Bargar RN, IBCLC