Sunday, June 28, 2009

It's My Heart National Conference

This weekend my friend Mary and I attended the first annual national It's My Heart conference in Houston, Texas. I was so very scared to fly, but Mary let me break- I mean hold her hand as we took off and I settled down once we were up in the air (until we hit some turbulence...)
Despite my fear of flying, I am SO glad I went.

The conference was well organized and informative. The first speak of the day was a surgeon at Texas Children's Hospital and spoke about the advancements in surgery. It's amazing what the last 50 years has provided us in terms of surgical innovations. In the late 1800's it was considered malpractice to do anything to the heart. The medical community thought that if you do anything to the heart that the patient will die. Cut to 100 years later where surgeons are able to do heart transplants, repair holes in the heart, provide a new lease on life for a child who might otherwise not live to see their third birthday. It really was amazing to see how far CHD surgery has come - and also how far it has to go.
The first breakout session we attended was about genetics. Texas Children's Hospital (TCH) is doing lots of research to try and pinpoint genetic explanations for heart defects. I think research is extremely important and to me is as important or more important than surgical advancements. If we can prevent the defects from occuring in the first place, the children won't need surgical options! I know it's wishful thinking, but I like to believe that by the time Amelia has children, that CHD's will be eradicated. Honestly, though, it's really not a pipe dream - that's likely 25 years from now and seeing what they have learned already, it might not be that far off. However, we need to continue to raise money so that these genetic research programs can continue.
We then had a speak about interventional cardiology. This was fascinating. Dr. Justino is an IC at TCH. There are so many things that they are able to do without doing open heart surgery. He showed videos of the various procedures that IC's are able to do using a catheter and balloon through a major artery (in the arm, leg or both).
The next breakout session was about the family dynamic. The speaking, Michelle, was extremely engaging. What I took away from her discussion was that we should not feel guilty for what our child is going through. We did not cause it, there is nothing we could have done to fix it and that we are doing our best by supporting our daughter through this journey. It's easy to fall into the "why me, why us, why her" trap - but we must accept what we are given and do the best we can with the hand we are dealt. This is our "normal" - we don't know any different and neither does Amelia. Normal is relative....
Finally, there was a panel that included Mike, a 39 year old who had open heart surgery in his 20's, Jill a 32 year old who has had multiple open heart surgeries, and Mark, who at 6 months old underwent a compound surgery for Tetralogy of Fallot. Mark is now 32 and one half of the singing group O'Shea. O'Shea also performed at lunch and were amazing! I am definitely a fan (and promptly downloaded some songs on iTunes when I got home!) These three spoke of their triumps and tragedies with their respective CHDs/surgeries. It was good for us as parents to see these adults who at one time were babies just like ours and have overcome many obstacles and have done well for themselves despite their CHDs. I always tell Amelia she can do whatever she wants with her life - and these three individuals are living examples of that!
I was honestly sad that that the conference was over. It went by too fast. I am so very glad that I went and learned more about the #1 birth defect. It further instilled my drive to support awareness and be an advocate for It's My Heart. It's important for me to make this journey mean something. I don't want it to be "oh, my daughter had a CHD and had open heart surgery when she was 4 months old, but we don't talk about it/think about it". I want her to be proud of what a courageous, brave girl she was/is and I want her to know what an inspiration she is for John and I.
Now I am home - I surived the flight home and didn't need to grip Mary's hand to make it! I felt a little more comfortable on the return trip, but still am not a fan of flying! It's always nice to touch ground!!


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