In a message dated 10/31/01 5:11:46 PM, [log in to unmask] writes:
I think the following statements made a lot of people feel defensive. Having
worked in 2 hospitals, and extensively with the NICU, I concur with Mary Kay
Smith who said that we should all find an opportunity to experience the
NICU.
It is very difficult to try to balance the fine line between preserving life
and protecting long-term quality of life. I think it is essential to have
someone like Melisa who continues to support the mother in her mothering
choices while medical people support the baby in getting well. IMO, NICU
(and
PICU) nurses are an amazing group of people. I have seen them cry when
babies
got well, when they got sicker and when they died. I have seen them mother a
baby abandoned by parents who couldn't parent a child so sick and I have
seen
their frustration with very unhealthy parenting and their deepest support
for
loving mothers or bf'ing. And, I personally will always be deeply grateful
to
the PICU nurses who cared for my son in intensive care years ago, advocating
for my choices, even in conflict w/ the doctors.
But, I also think that the experience of outsiders is valid and
important. I have often seen mothers' experiences dismissed as "just
perceptions". The fact is that critical decisions might be made based upon
"perceptions". I think that medical professionals need to care about the
experiences of families and LC's or LLLL's or anyone else in the NICU. In my
experience, defensiveness tends to take over and little attention is paid to
these concerns. The complaints Melisa has are the same complaints I heard
over and over again from our clients in the NICU, so I know they are real.
Not every single doctor or nurse supports bf'ing, and of those who do, many
still rationalize away real protection of bf'ing in NICU settings. Melisa
said:
<< We worked to get the mom a pump, more like fought to get her a pump.>>
I have had to do this, even having full access to the hospitals.
<< Mom has colostrum (as she has been pumping it and giving it to the NICU
nurses who are doing God know what with it, as they aren't feeding it to
him). >>
I cannot tell you how many times mothers told me they had no idea what was
being done with their milk. Sometimes, they just didn't realize where it was
in the feezer, etc, but sometimes it was thrown away (sometimes the mother
was told the colostrum was too little to save!). I even saw a nurse give AIM
while the mother left the bedside for a few minutes and left her bottle of
marked breastmilk out for the nurse. These things do happen.
<< This morning one of the NICU nurses noticed she was having trouble
getting
him to nurse and offered her a substance to put on her nipples.... IT WAS
CHERRY FLAVORING!!! The NICU nurse said that they had been putting it on
the
pacifier to get him to take it. >>
Clearly, this has also happened in other hospitals, but even if no one else
had spoken up, why would we doubt Melisa's experience? B/c we wish it wasn't
true?
Ann wrote:
<< But I think there is more important problems for this baby. As I
understand the
progression of the labor and delivery, this child was in trouble long
before
in came to the NICU or received a pacifier (flavored or not).>>
This may be true, but it doesn't mean that it becomes okay to interfere w/
bf'ing or gut health just b/c the baby's immediate medical needs are
pressing. This is an attitude I often see in NICU, a diminishing of the
importance of a mother or LC (or peer counselor)'s complaints b/c the baby
is
sick. As if bf is nice in the NICU, but the rules don't really apply there.
Well, they do apply and are often easily supported. I have had clients make
themselves available almost 24 hours to avoid pacifiers--which is their
right. I have also heard them roundly criticized for doing so behind their
backs. When a friend's toddler was in PICU, a nurse asked me "Why is she
pumping, she doesn't really think he will live, does she?" The multiple
levels of what bf means to a family are often completely dismissed in NICU.
<<This sounds like a VERY traumatic birth, that should have been a
C/section,
and screams of Cephalic-Pelvic-Disproportion or CPD. >>
It sounds to me like Valerie's concerns about the cascade of medical
interference b/c of GBS is valid. CPD is almost always a bogus diagnosis and
GBS is, as Teresa said, nowhere near as likely to cause death as most
mothers are frightened into thinking. I don't think that there is any
benefit
in arguing where the problems come from, esp as a way to again diminish the
concerns about interfering w/ bf and attachment.
<< Better a feeding tube for a few days and mom pump than no baby at all.>>
I think everyone would agree with this, but in the meantime every effort
should be made to prepare this dyad to nurse.
Marian wrote:
<< It is certainly unfortunate there appeared to be a lack of communication
and explanation to the mother and this is a good reminder to all of us who
work with mothers whose baby's are sick that not only should we ensure
proper
care of the baby but adequate explanation, support and practical input such
as helping her to sort out pumps and expressing.>>
I agree completely. And I also believe that nurses should treat the
counselor
the mother will work with when going home w/ respect and as an ally and be
willing to learn from her, as well as teach. In all research I have read
about parents' experiences in NICU, the nurses' ownership behaviour towards
babies has been cited as a major issue for parents. Parents tend to
cooperate
(comply) far more out of fear than from informed agreement with treatment
plans. Not only fear that the baby might die, but fear that the baby will be
taken from them or they will be viewed as bad parents or lose all control of
the baby. In my experience, very little informed decision-making happens in
NICUs.
So, my suggestions to Melisa are to try to continue to support the mother in
the NICU. If there is an LC on staff, try to get her support or that of any
other nurse who seems willing. Ask questions, rather than making assumptions
(like where can the mom store/find her milk?), as if you expect it has been
properly handled. Do not let the mother see you acting on assumptions--you
can easily lose credability. No matter what your relationship w/ the mom,
she
will choose the NICU over you (they control the baby), so don't pit yourself
against them. Keep offering options, but remember that your best bet in
helping her is to maintain a trusting relationship. Let the staff know you
would like to learn from them--I have found most to be very willing
teachers--they have to teach parents who know even less than you all of the
time. And good luck!
Jennifer Tow, IBCLC, CT, USA
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