Sunday, March 12, 2017

Just thinking.

Life Updates

Hello all, I haven't forgotten about you and I know I haven't been in touch.  Life is crazy and busy and it's hard to keep up sometimes!

About a month ago I attended the support group again for the first time in at least a year.  It was so nice to be back and surrounded by those who walk this journey too.  I listened as newcomers shared their heartbreaking stories of loss and where they are now.   It's tough to make it to group sometimes, babysitters and other life things often get in the way.  But there's nothing quite like finding a group of people who understand you.

I've been watching "This Is Us"  That show is quite the tearjerker and I didn't think I'd make it through after watching the first episode.    It's sort of like Grey's Anatomy to me though.  It's hard to watch, but I get attached to the story line and the characters.  It also brings some comfort to know that these shows are bringing infant loss to light and making it less and less taboo to talk about.  It's making people realize this is more common than we would like it to be and more people are understanding it.  Less people run away from me when I tell them I lost a baby, they empathize. They are more understanding.

Dear Medical Professionals

I've been doing a lot of thinking lately.  I was asked what would I wish to tell a group of doctors who are weighing the pros and cons of potentially moving forward with treatments for Potters Syndrome babies.  What message would I have for them.

I would want them to know that it should have been my choice. When I brought them a potential treatment, they should have given me the outlook and let me make the decision on how far I would be willing to go to save my baby.     I would not have tortured him, but I would have been willing to put him on dialysis if it meant a later kidney transplant and survival.    The main reason they refused was because it was considered experimental and therefore not covered by insurance.   I would not have had the funds to cover the treatments without insurance coverage.  The secondary reason was that it hadn't been tried/successful before.  At least 2 doctors told me that it sounded like something that would open up possibilities but that it was unlikely to work .

I would want them to know that my son deserved a chance at life.  Babies are born extremely early and are placed in some very expensive "experimental" treatments in hopes of saving their life.  Why not my baby? Why didn't my baby deserve that chance too?  Babies are born with other abnormalities all the time that would be fatal if not for experimental treatments to save their lives.

They say it is inhumane and purely experimental and that's why we shouldn't move forward.  Inhumane?  Is the dialysis we offer to adults with kidney failure inhumane?   We don't question the value of their life, we offer dialysis, which is exactly what I wanted for my child.  My child who had no other issues besides missing kidneys.

Gabriel probably would have been a prime candidate for those treatments because he didn't have any other problems.  He wasn't brain dead. He wasn't paralyzed.  he would have lived a fairly normal life had he survived.     He would have spent some time in the NICU the same way premature babies do.  He would have been on dialysis and underwent a kidney transplant at an extremely young age.  He would have been on transplant medication for his entire life and likely would have needed at least 1 other kidney transplant.  None of those things seem inhumane.  These are things we do for living and surviving people everyday.   Yet, my baby didn't deserve that same treatment apparently.

Surprisingly to me, some of my message will actually be a part of the future of Potters Syndrome babies of the future as they get shared with medical professionals by people who have more power than me.   His effect continues on!

So Gabriel has been on my mind a lot lately.    In very good ways!  I miss him, I'm so proud to have him be a part of my life.  I'm proud to share his story and hope that he will make an influence on this world, on the world of Potters Syndrome and other kidney deformities.

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