Yes. I know it's a case of sour grapes, but that doesn't mean I should bottle up these feelings. I need to acknowledge them in a sort of "open letter" to NPR.
Dear NPR:
I understand that Max Page is a bit of a celebrity after portraying a mini-Darth Vader in a Super Bowl commercial in 2011. I am also aware that he was born with the same heart defects as my daughter Sonne. I also know that his corrective surgery (and the 7 procedures since) were successfully completed at Children's Hospital Los Angeles by the same surgeon who operated on Sonne.
What you do not know is that my daughter's surgery was not successful. She died. A mere 48 hours after the attempt to correct her defects, we removed her from the heart and lung machine and said goodbye. She was 109 days old.
You cannot possibly understand how devastating it is for me to hear your coverage of Max's most recent valve replacement. I heard that he was to undergo the procedure while driving home from work last Wednesday. I couldn't help but think that had Sonne lived, she would have been having valve replacement surgery around his age.
Last night as I pulled into my driveway I heard the sound byte of Max telling reporters that he was looking forward to having a milk shake. He was being discharged. He was going home. And while I am thrilled that his surgeries have been successful, it is agonizing to listen to this news coverage. My daughter didn't get to come home.
I think what upsets me the most is that there are countless other families whose children are undergoing procedures such as these who aren't receiving any news coverage. There are families who have suffered the loss of a child while in the care of the same surgeon. For us, there is no news coverage. And had Max Page not been in that commercial, there would be no news coverage for him. I wouldn't have to hear the sound bytes of his pre and post-op comments to reporters. I wouldn't have to relive the awful loss of my child -- a child who never learned to speak, but somehow spoke to my very soul.
I know you covered Max's latest procedure as it was a human interest story. And it had a happy ending, so all the more reason to touch upon it as the news is often dark and dreary. Please simply understand that there are those of us listening who, try as we might, cannot help but wonder why our child isn't the one talking to reporters and looking forward to having a milk shake.
Thank you...Alison.
