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.
If I ever have to go through this again (I pray I don't, especially being 9 weeks pregnant now), I would do similar too. I would demand more be done. But then again, the more I think on it, the more I wonder, would I just be prolonging the inevitable? Are these people just prolonging the inevitable? It still makes me sad, and it makes me miss my Michael all the more.
ReplyDeleteRachel, I will keep your newest little one in my thoughts. Thankfully, most people do not experience Potter's more than once, but there are some of us out there. Hopefully answers are on the horizon. Perhaps little Abigail's story can bring more medical progress faster.
DeleteI have searched for an update as to Abigail's condition and I found a semi-recent news post indicating she was doing well with dialysis and they expect she will get a kidney transplant at one year. I hope she continues to do well and can defy the odds. But at the same time the whole thing makes me so sad because of what I've lost. I know what you mean when you say you miss your Michael all the more.