Hi Carrie and Pat,

You have just asked some of the most thoughtful questions I've heard online
in a while.  I am a LLLL, for three years now, and I have miscarried four
times.  I have had plentiful opportunities to read up and discuss with other
women the deaths of their children, both before and after birth, plus my own
losses gave me plenty to think about.  My long acquaintance and constant
correspondence with a friend whose baby has been on the brink of death
overcoming the damage of Krabbe's Disease has also offered food for thought.

I can't cloud this issue with facts or research, but it seems to me that the
death or catastrophic illness of a baby can be terribly disempowering to the
mother.  The medical aspects can make the situation even more mystifying and
distancing.  In fact, some helping professionals as well as friends may urge
the mother to give up on a *lost cause* to try to spare them some pain.

But a mom is usually biologically and hormonally and psychologically geared
up to be a mom for her baby, and it just goes right against her grain to act
as if nothing happened, or if this baby doesn't matter as much as a *perfect*
one might.  In a situation where there is so little that can be done, I think
it is still very appropriate for a mom to have the chance to mother her baby,
by touching, cuddling, breastfeeding, pumping, whatever.  I don't think there
is any downfall to encouraging them to do so, and in the long term it will be
more healing for them to know that they had the chance to completely immerse
themselves in the mothering of their baby for the brief time that they had to
do so.  Just to know that right now, or right then when they had their chance
to do what nobody else could do for their baby, they did it.  No regrets.

For these women in this situation, it might be interesting to discuss what
kind of a birth plan they would like to make arrangements for, to offer the
maximum possible respect for the mother's relationship to the baby.  The "one
size fits all childbirth" treatment probably isn't appropriate.  I don't see
any trouble in preparing them for the possibility of breastfeeding, but I
don't know that it would be right to lead them to expect to be able to.  They
already have plenty to grieve about without adding items to the list.
There's nothing you can do or say to make it *all better*, but it's always
respectful to say how sorry you are to hear about their situation.
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In the long term baby with the illness, Pat, I get a sense that you are not
happy that the baby was sent home with the life support items.

"She was sent home to die on her own--with all of the machines.  She is still
living,
of course, taking every minute of this family's time and energy.  She
requires 24 hour observation of parents or home health nurses."

Whether the mom feels that way or not Pat, this is probably a perspective
that needs to be kept to yourself.  I don't mean to be saying that you
haven't either!  I remember how flabbergasted I felt when a terminally ill
baby's mom told me one night how her baby was expected to die, and there
probably wasn't anything that could or ought to be done.  I geared up for the
"baby is dying" scenario and the next morning she called to say they were
going ahead with the cord blood transplant because it was the only possible
chance, even though it was unlikely to work out.  This baby was also given
fortifiers around 6 months, even though there was no chance she was starting
solids.  Maybe it's standard practice.

But if you get the chance to tell this mother that her attentive care to her
baby might have helped her baby to exceed medical expectations, I hope you do
so.  You might be one of the only people in a position to recognize that.  It
might just be that the breastmilk she has provided along with her touch will
be enough to patch up some of the neurological deficits the baby has.  I
don't mean to be talking up some mystical mothering quality, but something
really good happens when a critically ill baby is attended to in the way you
describe.  I frankly felt that my baby's friend was a goner and that the
doctors had done their expensive experiments and sent her home to die.  But
very slowly, over time, she really is improving.  Whereas the Krabbe's babies
*abandoned* to the transplant process at the hospital, in excessive deference
to the medical establishment perhaps, seem to have invariably died.

I am fascinated by this subject, and would be delighted if this grew into a
thread.

Adele McHenry Koenen
LLLL

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