2/1/11

February: CHD Awareness Month

Since today is February 1st, I thought I’d post a bit about CHD.  CHD is Congenital Heart Disease or sometimes Congenital Heart Defects.  CHD is the leading cause of infant mortality in the United States.

My life has always been touched by CHD, but I wasn’t really aware of it until my daughter was born with Hypoplastic Left Heart Syndrome (HLHS).    My Aunt Lynda is a miracle baby.  Born in 1949 with Tetrology of Fallot, she was given the gift of life through an experimental surgery.   My brother also has CHD.   My aunt was my aunt and my brother was my brother and though I was vaguely aware of “heart problems” I can’t say that it really affected my life.

But 13 years and 6 months ago my world was torn apart by the news that my newborn daughter entered the world with multiple heart defects.  Some of these defects together are known as Hypoplastic Left Heart Syndrome.  Some of her defects are rarely seen as part of that syndrome. 

We were told that without surgery she *would* die.  With surgery, she still only had a 50% chance of surviving.  We were also told that *if* she survived the surgery, she would have to have two more surgeries and *if* she survived those her odds of living to age 5 would be 50%.    

For her year group, 65% of the HLHS babies born in 1997 survived to age 5.   I wonder, but haven’t been able to find out, how many of that 65% are still alive.   Her current prognosis is unknown.  We have no idea what her expected life span will be.   The last time I checked, the oldest surviving HLHS babies were college age.

Today I’ll hold her close and remember all the other CHD babies that didn’t survive and I’ll pray for those babies who are currently fighting for their lives. I don’t know what her  future holds, but today she is very stable and doing well. God knows her future and I rest in Him.

2 comments:

  1. What a beautiful post. I am so blessed to know your Supergirl.
    Many Years to her, and to you.

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  2. My daughter was also born with HLHS, she was born August 19, 2011. We don't know how old she'll live to be, but hopefully both of our girls will live a long, happy and full filled life!

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