Recently, I posted of the first believed survivor of Potter's Syndrome bilateral renal agenesis and now that I've had some time to digest the news I'd like to share my lay person's opinion on what I would do from her on if I ever heard the words "Potter's Syndrome" in my family again. I emphasize I am a lay person, not a medical professional. I'm just a mom who has carried two babies with Potter's Syndrome through to their full term births and then cradled them in my arms until their time on earth ended.
Based on precious Abigail's story here is what I would do. I would ask for a second opinion (which I did do both times), but for the second level ultrasound I would request that my uterus by injected with saline so that the baby's anatomy could be better visualized. Then, I would ask that a repeat ultrasound be performed one week later without saline. At the repeat ultrasound I would ask to have my fluid levels compared with what they were the week prior after saline injection. If it showed that some saline was retained in my uterus I would ask my doctor to perform another saline injection and repeat ultrasound to see if the saline continues to be retained and to carefully monitor my baby's growth and lung development during these weeks. If there was progress I would request weekly saline injections as well as steriods to speed up baby's lung development as I believe the risk of premature birth would be even more increased by the saline injections.
I would print out any information I could find from John Hopkins doctors regarding Abigail's case (an official statement was released) and encourage my doctor to read it and give me a chance. The prognosis for Potter's has traditionally been 100% fatal and now that there is a glimmer of hope I would ask the doctor to give my baby a chance for life. I would be realistic and admit that I know it is a slim chance and I would still prepare for the absolute worst outcome and would make sure I was fully informed about all of the risks involved in the saline treatments (of which there are many, I'm sure) and I would also become fully informed as to what would happen should my baby be born alive and with functioning lungs. I would make sure there was a medical plan in place to handle all possible anticipated outcomes.
We don't know if Abigail's survival thus far is a miracle or is something that can become a reality for many but I think that it's definitely worth our persistence with medical professionals.