Jaime has gone to the media with her story. Her message: it isn't a guarantee, nothing is. But its a chance, a glimmer of hope. It's a treatment that should be at least discussed when giving a BRA diagnosis.
She asked me for advice on things she should be cautious saying so she wouldn't offend us potters families that have already experienced such a loss. My answer was simple: make sure you acknowledge those of us who tried to advocate for our children and couldn't break down the brick wall medicine has built. Make sure to acknowledge how very lucky you were to have found a doctor willing to try, willing to cross over that wall and try to save your daughter. Most of us couldn't convince physicians to do something.
I've been watching and picking these news broadcasts apart - she had asked me to keep an eye on things she was saying. The Today Show interview went well. I didn't like the way the interviewer worded the final question. She suggested that the parents message was to parents, to fight for your child. They rerouted the answer saying that most parents don't need to be reminded to fight, but instead their message is geared towards physicians to offer this as a possible option. I liked the answer, not the question.
The Fox News segment upset me. Fox News started by saying that Potters Syndrome is a "fatal lung condition". It's not. It's a kidney condition, the lungs are a side effect of having no kidneys. When they got into the report, their reporter described it as a kidney condition which corrected the oversight, but I was already upset by the misinformation. I got offended and upset and I'm not sure why, I jumped on the defensive. I guess it just hurt and hit a nerve. Then a little further into to segment, Fox News stated that most parents abort after receiving the diagnosis, that she is one of the rare few who fought and kept the hope alive. I beg to differ, although many do abort their pregnancies, I don't think it's fair to say "most" and that it's rare to carry on. I guess I feel that way because so many moms had found my blog and when contacting me had made the decision to continue the pregnancy. It's more uncommon - in my experience - to terminate.
I'm so thrilled for Abigail and her family. I'm glad she's not suffering. I'm glad she's doing so well and have high hopes for her future. Hopefully her survival will make a difference for the future of BRA and those effected by it. I just wish they would have listened to me when I tried to get them to do exactly what Jaime and her husband did. I wish Gabriel had been given that same chance.
