Monday, August 5, 2013

life altering decisions

This Op-Ed and the related comments breaks my heart into a million pieces.  The article discusses the resuscitation and end of life decisions surrounding the birth of premature babies, particularly those born between 23 weeks and 26 weeks.   It highlights the concern that parents of extremely preterm babies are ill-informed prior to birth and during the very seriously critical days that many micropreemies that survive the delivery room encounter.  It suggests that in some cases both parents aren't informed and/or both given the opportunity to have the proper decision making power in their child's care.

What breaks my heart into a million pieces is that these decisions are so painful and can be so circumstantial and are absolutely life altering.  The decisions are a product of the situation and influenced by those delivering the statistics.  Typically the events surrounding the birth of a baby late in the 2nd trimester happen incredibly quickly, leaving parents precious little time to understand the unimaginable world in front of them.  I suspect the haste nature of the events forces many to make decisions based on emotion alone.  There is room for an enormous amount of guilt and regret no matter the decision that a parent makes in this situation, but no on can understand being in the position to make a decision until they themselves have been there.

I was "lucky" enough to be on bedrest for nearly a month before Virginia's arrival.  Unlike many parents facing a similar mountain, we had the time to research, the time to talk with neonatologists, the time to pray, the time to think, and the time to discuss.  I had the additional benefit of growing up under the wing of a Pediatric Physical Therapist (my mother) and had a better understanding than most of what the endless list of complications that the neonatologists referred to actually looked like... in real life.  I also had done some research on the topic in college.  Yet, none of this made any decision we made during those pre-viable days any easier;  more informed but no easier.

I believe that there are no right answers here.  Discussions like this this help bring everyone to the table and help raise more awareness.


edited to add:  After reading more of the comments on the article,  I am left angry and realizing how much more awareness is needed on this issue.  I stand by my statement above that there are no right answers while in this situation but I also know what my 19 year old self wrote in that college paper (linked above).... "Social attitudes towards the impending disabilities of the premature infant are even more limiting than the actual physical impairments. People with disabilities themselves testify that their disability doesn’t often preclude them from enjoying a good quality life."    Statistics are just statistics.  They are guidelines for parents and caregivers to make decisions but they do not determine the outcome.  

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