Thursday, February 7, 2013

CHD Awarness Week Feb 7-14

This is my niece Abby. She is our CHD Heart Hero and the reason I spread awareness about CHD. Abby was diagnosed with a CHD called Tetrology of Fallot. She had open heart surgery to help fix this when she was 5 months old. Then again when she was 10. But a year later she went into heart failure and had to have a heart transplant. A few more surgery's and a lot of doctor visits later. Visits with the transplant board about when she should go on the list and what level she should be. Last year they put her on the list. A few days later (no exaggeration it was literally about 3 to 4 days) they got the call that they had a heart for Abby. this was a very trying time for our family. We not only was concerned about Abby but the family that lost a child to be able to bless Abby with this heart. James and I were living 300+ miles away at the time and couldn't be there as much as we wanted to. The surgery wet well, textbook even and Abby started the long road to recovery. For a long time she had to be in "confinement". Which means she couldn't go into any public buildings. SO school, church even grocery stores and restaurants were out. (unless the restaurant had out door seating). For awhile if we wanted to see Abby, all we could do was go to her bedroom window and wave at her from outside. It was a very hard time for our little social butterfly. But she made it through. Today she is doing excellent. Her rejections meds are slowly decreasing from 34 to...actually I'm not sure the number of meds she has to take now. :p She is back in school, can go back in public places again and is actually preparing for her (hopefully) last surgery for a long LONG time to fix her scoliosis which is also a result of her CHD. Abby's story is so amazing to me. This little girl has been through more in her 13 years of life then I could even begin to comprehend. Her faith, hope and zest for life and living everyday to the fullest is such an inspiration to all who know  and come in contact with her. She is such n inspiratin to me as well. I have learned so much from her. To help spread awareness, Abby and her mom have put together a little video. Abby talks about CHD and what it's like having to live with it. I was unable to post it because the onl posted it on facebook but you can find it on Abby's Perfect Broken Heart. Or just click HERE. You dont need a facebook account to be able to view the video.

Please help spread Awareness.

1 comment:

Christina.Michael Nielson said...

I don't know if you can answer this question, but do you know if Abby's parents saw anything on her ultra sounds when she was a baby before she was born? Did they have any idea she was going to have to deal with this?