At twenty-eight weeks, she fell.  She hit the baby.  Intraventricular hemorrhage.  Whatever that meant, it couldn’t be good. …might lose the baby.…she could be born brain dead.

She was born.  She was a living, breathing beauty. 

Hydrocephalus… the blood prevented the cerebrospinal fluid from exiting the ventricles as it’s supposed to.  Brain surgery… a shunt.  It’s not that dramatic of an ordeal.  A shunt, to drain the fluid from her brain.  She’ll be okay.  Only a few weeks given to live.  Better make it a good two weeks. 

After the shunt was placed, her parents loved her SO much. Two weeks isn’t long enough.  Couldn’t we please just make it two months?  Please, god, two months. Two months.  She’s not a normal baby.  There are delays.  Her shunt’s not working properly.  Could be a shunt malfunction. Is she brain damaged?  A little.  Not much longer to live, though.  Just love her.  Love her and hold her.

Four months old now.  She’s so beautiful.  She may not be progressing like a normal four month old, but she’s so pretty.  She’s responsive.  She’s not a vegetable.  She can move.  She can smile.  She knows mommy’s voice.  She looks in daddy’s direction when he comes home.  Just a little longer… please, just a few more weeks.

Today I spoke with the family. Surgery?  Or Hospice care? What do YOU decide?Before you answer, I need you to remember something… If we save her… if we prolong the inevitable… what happens if she dies at five months old?  What about ten months old?  What if she beats all odds and lives– but is only ever a vegetable?  She might never be potty trained.  Her body can grow and her brain continues to deteriorate.  She’s not even baseline.  In fact, her white matter keeps growing smaller and smaller. Now what do we decide?

Don’t be too quick to make a judgment.   

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