you'll understand why parents of premature babies do so much to advocate for their children. Why they fight, and why, at times, they may seem a little sensitive to certain comments. It blows my mind that so many who have not experienced prematurity seem to think that they know the right thing to do and feel as though they can judge despite their lack of experience and knowledge. And it blows my mind even more, if that's even possible, that anyone believes that they have the right to determine whether a child, someone else's child, has worth. I guess I should feel "lucky" that Jack was born just past the 28 week mark, because otherwise, in the opinion of too, too many in our society, he may not have been worth saving. I literally could vomit just thinking about the possibility that I would ever have to prove to someone that Jack is worth it. Don't get me wrong, I absolutely believe that parents (and society) should be as informed as possible about prematurity. (Obviously, that's why I do so so much advocating and educating.) But, here's the thing...premature birth is often an unexpected, sudden, fast-action event where information and knowledge (although it may be given) is often overshadowed by the emotions and fears of parents. Parents whose expectations have been thrown out the window and shattered on the ground below. We were informed, but we were also overwhelmed. Hearing the statistics and outcomes is a lot different than living them. Even so, Jack was "worth" it then. Jack is "worth" it now. And the only perception or judgement of that worth that is valid is mine...his father's...and his own.
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| Pretty sure he is certain of his worth. |
I read that article with an open mind. I know Jax's birth at 23w3d was "risky business" and that many hospitals would not have saved him, even if we pleaded with all of our hearts. The article did not make me mad...it was the comments that got to me. People who have absolutely no experience with having to make a decision like this...and the RNs and interns and residents who see it every day and *still* believe "they" should be the ones to make the decision. I guess those people haven't met our tough little guys! And that is why it's so important for us to keep advocating. Jack (and Jax) is **totally** worth it!
ReplyDeleteI agree, the article itself didn't bother me so much. I've always been troubled by how little I knew about prematurity before Jack and how ignorant the public-at-large is concerning the issue. And actually, a lot of the comments were great. But some of them really made me nauseous. I guess what "got me" is that I never thought that I would ever need to defend our decision to save Jack or need to argue his worth with anyone. The fact that others, specifically those with no real knowledge or experience, think they can place value on him really bothered me. I really did not like the comments about the costs involved either. Jack's care since his early birth has probably neared the $1 million mark. It breaks my heart to consider that anyone would the cost was not worth his life.
Delete100% agree. I wrote a blog post in response to the article yesterday and I have a feeling that my response would have been completely different had I read more of the comments. I made the mistake of going back and reading through the comments and found myself raging mad.
DeleteI have seen "worth" thrown around alot in various responses to the article. In actuality the author never used that word. She never discusses the costs, dollars or societal, in her opinion piece (the comments are a different story). What she does highlight is the need for parents to be better informed, something I agree with wholeheartedly.
I really think the article brings up an issue that needs to be discussed. Its an issue that more expectant parents need to be aware of. Its an issue that no matter what decisions parents make they should be able to make them in private after receiving factual and sympathetic counseling.