Saturday, September 7, 2013

Baby surviving BRA

In a previous post, I talked about Jaime Beutler. A congresswoman for Washington who had a baby diagnosed with Potter's syndrome. Her daughter, Abigail, was born July 15th at 28 weeks gestation and is a day shy of 8 weeks old. She's on dialysis until she is able to receive a kidney transplant. 

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. 


  1. Are you sure you and Helen are not full sisters??? You both write so well and in a similar style!!! You have touched many people with your blogs and posts. The Lord is truly working though you guys to help others in need. Isn't it interesting to be an instrument of the Lord!!! Very proud of you and Derrick for continuing on your advocacy and supporting those who are having to endure difficult decisions and comforting those who live by them. Because of your reaching out many parents are "better" to have communicated or met with you.
    God Bless your work.
    Love you

  2. I am so proud of you, and still think of you and pray for your family. I am so glad you have been willing to support and encourage others in the midst of your own grief. You are courageous!
    Love from MN.

    1. Thank you Beccy! Some days and some situations are easier than others. It takes a lot sometimes to continue reaching out. I rely a lot on support group and my blog to let those emotions out! Lots of love!.

  3. I'm so sorry for the loos of your son, I have a dear friend going thru this right now, it makes me so sad and it aggravates me the fact that not a single doctor is willing to take the risk and help her fight for the life of her daughter. They all just say it's not possible. How do we know the fluid ijection won't work if we don't try. My friend gave up... she's no longer asking doctors to help her do anything for her baby, she's waiting until her baby is born hopefully alive so sh can baptize her then bury her. My heart is broken.