Saturday, September 28, 2013

I Am a Selfish, Money-Sucking NICU Mom. A Reply to the commenters of Radiolab's 23 weeks, 6 days.

Listen to this podcast:

Wow. Wow.

  I was in the car when I first caught this. I listen to Radiolab fairly often, but because I was out and about while this was airing, I had to go back and listen to what I missed. A very moving story. And then I went and read the comments to this podcast, and well...I guess I shouldn't be surprised at the vitriol. The politicization of prematurity.  The insertion of the abortion debate (WTF??).  The viewpoint of selfishness on the part of the parents.

You know what I say to that? You. Have. No. Fucking. Clue.

Yes, premature birth and subsequent NICU care is expensive. The ongoing care beyond the NICU can also be quite expensive, especially for the infants who have disability due to their prematurity. But I venture to guess it probably is no more expensive than an adult with chronic illness like diabetes- or even worse- a progressive neurological disease that will ultimately kill you like ALS or Parkinson's. I've never come across an argument that we should not care for those adults because of the cost. It would seem inhumane, frankly, to say that those people should just be left "out of the system" to fend for themselves and their disability.

Many premature infants are not expected to be premature. About 50% of premature births are of unknown reasons. Vera's birth falls into that category. My water broke, I went into labor, she was born hours later at 31 weeks. There was nothing I did because I was selfish that led to this. There was nothing I could do to prevent it, at least at this point in medical history.

As far as criticizing the parents in the podcast of what they did for their baby and how they read the baby's responses...well, go look above. 

When you have an infant in the NICU, you  are helpless.  All of the things you would normally be doing if you were a new parent of a full term infant is not happening for you.  And so you adapt by doing what you can- which is cuddling (kangaroo care), pumping your milk, and providing whatever comfort you can.  Because of the premature neurological system these babies have, continuous holding, talking, and doing what you would normally do for a full term infant are not "allowed" because it can actually cause them stress.

So- what I did frequently when I was allowed to hold or touch Vera was either tuck her into my cleavage but unable to pat or stroke or rub her as your instinct as a comforting mom would typically do, or I would stand leaning against her heat and humidity controlled incubator with my hands through the port holes while placing one hand firmly on her head and the other cupping her butt.  Applying gentle pressure.  Because that was all her body could handle.  I also spent more time "cuddling" up with a hospital grade breast pump.  Again, because many times that was all I could do to be a useful mom.  Reading or singing quietly was often done in the NICU by parents.  I never did, as I just talked to her about day to day stuff.

And even though we couldn't do all the things we wished for in a normal newborn, Vera did respond to us as her parents.  When Mark did Kangaroo care with her, her heart rate slowed.  When she kangaroo'ed with me, she never had dips in her oxygen levels.  When we talked and she was awake, she would follow the voice and look up at us.  She didn't do this with the nurses or even other family.

I would have done anything I could have to prevented this so she would not have suffered (and yes, I do think she suffered as she did endure painful procedures and care to keep her alive). As far as selfish- I think the notion of wanting to be a parent is the furthest from being selfish.  Being a parent, no matter when the child is born or how conceived is not a selfish job.  There is NOTHING selfish in what I do everyday as a mom.  If calling wanting to put a person in this world that will be raised surround by love and kindness in their family, and allowing them to become an independent, intelligent, creative, kind human being is selfish...well then, sure.  I was selfish.

Before Vera's birth, I knew the NICU was not an easy place.  As a nurse, I had cared for many NICU parents of varying gestational ages.  I knew that they were on a rough road.  I knew that the care their infant(s) were receiving was expensive.  I knew that they may be facing a long, tough path of disability for as long as they all lived.  I also realized that there is a wide gray line between viability and non-viability, which medical science keeps pushing.  In hindsight, I can say that my thoughts on it were just matter of fact, not any true empathy because I just didn't truly get it.  Becoming a mom has really taught me that you just don't know what it is like to walk in anyone else's shoes unless you've experienced it yourself firsthand.

May all those who feel preemies, especially those near that gray line, are left to suffer because their parents are selfish and a financial drain on the system NEVER have to experience a NICU first hand.  I don't think they would be able to walk in with their generalizations worn proudly on their sleeves if they were staring down at their fragile newborn.

So go ahead and call me a selfish, money-sucking NICU mom.  It was worth it.  And should some of my health care expenses go up because there are preemies out there that need medical care, then so be it.  Even disabled, those children have something to contribute.

No comments:

Post a Comment

Thank you so much for taking the time to read and comment on my blog! It means a lot you found me and felt it worthy enough to take a few moments to share your thoughts. Spam will not be posted, but feel free to link to your blog or related website.