Hypoplastic left heart is such a sad situation!  Having seen one
when I was orienting to regular nursery (before single room care),
when I saw the next one, I recognized it right away.  Others had
noticed "something not quite right" and baby was being assessed
further.
Where I worked, we could always call on the NNP (neonatal nurse
practitioner-one was available on the unit 24/7) to assess any baby
we didn't feel quite right about.  It did not require a doctor's
order.  This would serve to reassure when things were OK, assure
early intervention when it wasn't, and alert the NICU to a potential
problem if it was felt that baby could stay with Mom, but needed a
little closer watching to be sure it wasn't a problem.  Nurses were
much quicker to seek input this way in those cases of "gut feelings"
without any measurable assessment.  They might not be as free about
calling the baby's doc and would more likely just leave a note on
the chart for the next time the doc came in.
In a case like this, earlier detection wouldn't have made any
difference.  Unfortunately, survival rate is very low in these
cases.  While breast milk can be a miracle substance, I'm not sure
getting baby to nurse better or avoiding formula would make any
difference either.  (If surgery was beging considered, of course
breast milk would give baby a better chance of survival.)

Winnie

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