Tuesday, March 11, 2014

Our fight to save Gabriel.

It was brought to my attention a little while back that during our journey I never really outlined our fight to save our baby. I shared bits and pieces, comments here and there, but never really talked about the conversations we had with our doctors. I've been thinking back on it for awhile now, remembering that time and time again we were simply told no. 

When we first got the diagnosis, my first reaction was "what do we do?" The doctor was pleasant but explained that there is no cure, nobody had survived Bilateral Renal Agenesis. I was heartbroken and devastated. I wanted to run out of the clinic and never talk about it again. She insisted we make an appointment to come back and talk about things, that we had the option to induce now or to wait awhile, subtly insisting we induce soon. When we came back to the clinic I had done my google research (haha) and inquired about injecting fluids. Maybe we could get the lungs and other organs to develop and worry about the kidneys after birth. The answer was simple "it won't work." 

I was directed to a doctor for a second opinion. He confirmed the diagnosis, and again I inquired about injecting fluid. He explained that even if the other organs were to develop further (even though we'd likely missed the development time) that there was no equipment to do dialysis on such a tiny being, that we'd have to live on hope of finding a kidney match and essentially made me feel like we'd have to hope someone else's baby would die so that we could receive the baby's kidneys and the process was sketchy at best. 

When we went to the next doctor we were told the same things. It just wouldn't work. I tried to explain that by trying we wouldn't be any worse off than we already were, but that wasn't enough to convince them of an experimental treatment that gave my baby a chance at life. 

I talked to my doctor about the infusions and got told it was too late, even if she could try it. It had been weeks since we first got the diagnosis and knew something was wrong and there was no way the necessary organs would develop in time.  I knew she was right. Approaching 30 weeks we were too far along to hope for enough development in our baby. 

I'm not saying the doctors were mean or didn't want to help me. But doctors are scientific and there's no scientific research or documentation showing a treatment like that would have worked. Beyond that there's risks involved for them too. I understand why they were saying the things they were, in their experience it wouldn't work. 

I gave in, just like so many other parents had to before me. I caved to the understanding that there was nothing they could do. 

After seeing Jaime's baby survive after doing exactly what I was pressing for was both heart wrenching and rewarding. If I had tried a little harder, if I had pushed a little more, could he be here with us?  Could we have saved our baby? 

There's no guarantee. There's nothing saying the dialysis would have kept him alive. I've since learned through Jaime that you aren't waiting for an infant kidney, they can transplant with an adult kidney. Non-the-less there's no guarantee we would have found a match, or that he'd make it through the surgeries. There's no guarantee that something else could have taken his life. 

1 comment:

  1. I have friends that just delivered their son, Gabriel. He was also born with potters syndrome. He was born at 38 weeks and is currently 33 hours old and is nursing, crying, breathing great. He is being loved and cuddled. They have done 2 ultrasounds since his birth and have confirmed there are no kidneys. They are told they can take him home and just wait for him to pass..As there is nothing they can do. It is a miracle that he is eating, breathing, and functioning as a healthy baby boy and is heart breaking that they say there is nothing to be done. I just found your site and wanted to post, as I can't find any research on a baby living this long with potters syndrome with no medical interventions. Thanks for your posts!