This is me and my mom, Donna. We look pretty good, eh? I look chubby, happy, animated and not that you can tell because this is a black and white photo, but I look pretty healthy, you know, like I might have a rosy glow, right? And, of course my mom looks adorable with her gorgeous pageboy haircut and ribbon in her hair. And, honestly, I have no idea when this picture was taken of us, but it's one of my favorites because we do look happy and healthy.
I was born with Tetralogy of Fallot, most commonly known as "blue baby" and therefore, not in good health. And, if I was taking a guess I would put the time of this photo somewhere around the time I was to have the Blalock-Taussig shunt put in, perhaps even after the prodecure. I had that procedure at around 18 months old. The shunt was a stop gap until they could do open heart surgery a couple of years later.
When I try to remember back to the beginning of my heart story things are fuzzy. When I was having my first open heart surgery the medical world was quite different than it is today and families didn't have the access to information like we do now. My folks were young when they began navigating the world of congenital heart defects and there weren't a lot of resources in the late 60's, early 70's to help them process what was happening to their little girl. Our immediate family, grandparents, aunts and uncles, were there to help when and however they could, but there were no CHD survivor families to counsel them or show them the ropes. There were no congenital heart defect support groups, not even the American Heart Association was able to provide navigational resources, they were virtually on their own.
When my mom and I revisit those days, she's a little fuzzy, too and sometimes you can still hear a little anger in her voice when she talks about feeling cheated because she got a broken baby. I can't imagine what it must have been like for her, after she took her baby home, seemingly happy and healthy to find out that no, she wasn't healthy and she would need major surgery and follow up in order to correct what was wrong. As the baby, I can't tell you what it was like for me, because thankfully, I don't really remember.
Later on, when it was time for my first open heart surgery, there are things I remember, vaguely. Mostly that I received and inordinate amount of stuffed animals, night gowns and change. Yes, change, I was horribly uncooperative any time a nurse had to poke me with a needle, so at one point a coin bank was brought in and the nurses had to pay me to draw blood or give me a shot. And, there are a couple of things I remember from being on the operating table, weird things.......like the huge overhead light and the smell of the oxygen mask they put on me and the feeling of floating above the operating table right before I fell into oblivian and that was it! Oh, yeah and afterward I just remember trying to pull the trach tube out and having my dad stop me. Some occaisional wafting memories of an oxygen tent and alternately an oxygen mask, but not much else.
My story is long, really and doesn't just encompass my childhood procedures, as having a congenital heart defect is a lifelong complication. This doesn't mean that my life was in any way diminished because of my defect, it just means that it is a part of my life for all of my life. My story is about living as if I wasn't ever 'broken'.
It is my hope to encourage families who are dealing with a congenital heart defect to look at their child with clear eyes and to not see them as broken or different, but as warriors who have the strength and fortitude to battle through the road they have ahead of them and be an ispiration for all who cross their path.
Please visit this blog often, I am hopeful that families will open up to me and share their stories so that we might all heal each other through compassion and friendship.
I will add installments of my story as the blog grows and I will post information regarding congenital heart defects, awareness campaigns and events and support resources.
Please feel free to email me with any questions and I will do my best to get you the information you need. And, PLEASE share your story so I can post it here.