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. 

Potter's baby survives...

A couple months ago a woman contacted me who had found my blog. She was 20 weeks pregnant with her first baby, a little girl. She had just gotten a Potters Syndrome diagnosis and was feeling quite devastated. We talked for hours about my journey that day. I was able to answer some questions she had and give her some guidance.

She called me back last week with an update. Her plan changed dramatically after our conversation. At some point she managed to convince a doctor to do radical treatment and try to save her baby. She convinced a doctor to do something that I couldn't convince the doctors to do - infuse fluid into her uterus.

The treatment worked. Her little girl was able to develop all the other necessary organs so that she may live and receive a kidney transplant. She travelled a lot, and very far to receive those infusions. Despite being born 12 weeks premature, her daughter was thriving making her the first known baby to survive this condition.

I prayed hard for her family, the same way I pray for each mom who contacts me - that they have strength and support, and that they receive a miracle. A miracle is exactly what this mom got. 

I have mixed emotions of course. I'm so thrilled that her baby is alive and thriving. It's great to know that my gut instinct was right as far as infusing fluid. It's also sad to think that if I had the means to do what she did and find a doctor to just try, maybe Gabriel would have had a fighting chance. 

Then I see what this family and her baby, Abigail, would have to endure. Surgeries, dialysis, and hospital stays till the transplant. Then continued treatment after that, most likely for the rest of her life. I would have done anything to have Gabriel here, including all of the above. 

Deep down I know Gabriel's life was exactly what it was supposed to be and he's done so much for me that I wouldn't have any other way. I also have no way of knowing if the same process would have worked for Gabriel. Despite all that, I can't help but raise the question: "what if...?"

She's agreed to do a guest blog for me at some point... I can't wait to provide this information and her journey to other parents receiving their diagnosis so they might also have a chance.