My son, Jacob, was first diagnosed with Hypoplastic Left Heart Syndrome (HLHS) on November 3, 2010 in utero. It was a bright and beautiful autumn day that I will never forget. My wife went for an ultrasound and I went golfing with some buddies from work. On my way home, I got a call from my wife - one of the twins (the boy) had a problem. She would tell me more when I got home. When I got home she told me that she would not be giving birth at Winthrop as planned but at Colombia Presbyterian in Manhattan. When she said that, my body went cold. It was the first time in my life I had ever heard of HLHS. I knew about other congenital heart defects but not this one. A birth defect was the one thing I dreaded the most.
The rest of the day passed away in a fog as I was self-educated on the Internet about the condition. I did not like what I found. His chances of surviving the minimum of three open-heart procedures was around 75%. All I could do was thank God we lived so close to one of the top medical centers in the country.
I knew that life, as I knew it, just took a drastic turn in a new direction; a direction I never wanted to go in. In an instant we became that "Special" family. The one you always heard about but were grateful that it was not you.
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