Thursday, March 17, 2011

HLHS: NOT a death sentence!

Tonight's episode of Private Practice, a show that I normally watch every week, disturbed me to the very core.  Don't get me wrong, I don't look to any tv show for "advice" on anything.  I find all the breakups, makeups and hookups laughable and unrealistic.  But I watch it anyway.  Guilty pleasure, I guess.
No longer.  I am more disgusted than I can even put into words.  Tonight's story line was about a couple who had gone through IVF and had had miscarriages.  This baby, their "last shot" with the IVF, would be born with Hypoplastic Left Heart Syndrome, also known as HLHS. (What is HLHS, anyway?) The couple decided that, because the baby was "going to die anyway" they wanted the clinic to harvest this baby's ovaries to produce eggs so that the mom and dad could use donor sperm to fertilize them.  They didn't even want to meet their daughter, since "she's not going to live more than 24 hours" and "HLHS is a death sentence."
It literally made me sick to my stomach to hear this.  I have several friends whose children have HLHS and are living with it now.  They have undergone open-heart surgeries and don't always have the easiest time in life, but they have GOOD lives.  They do most of the things normal kids do.  They run, play, climb and get into trouble.  Ask any of their parents and they would most surely say that they never regret their child's life.  Never.  Sure, it's stressful to have a kid with a significant defect, whether it's heart-related or not.  But does that mean we just give up on them and walk away?  Pretend they never existed?
Where's the message of hope?  I think that's the part that is saddest.  Nowhere during the show was any information given about the options you do have when you have a child with HLHS.  Yes, it is 100% fatal.  If it's not treated.  That's the biggie there.  There are options, and there is hope.
This is why Congenital Heart Defects need further research.  This is why we spread awareness.  Too many out there are misinformed or under-informed. 
So to the writers of Private Practice, I say shame on you.  For putting fear into the hearts of parents out there who may be expecting a baby with HLHS.  For pretty much saying that you should just give up, because your child will die anyway.  For not giving any hope to these precious children. 
I have hope.  For kids like Eddie and Cameron.  Kids that I know and love, whose bright smiles and shining faces would make you change your mind about HLHS in a minute.  They may have "half a heart" but they are full of life.

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