Tuesday, November 29, 2016

The Waiting Game

I remember when I was pregnant, and when I was waiting for imminent open heart surgeries, I was so, so scared and trying to make sense of everything.  Every time a child passed, I wanted to know why and what I could do to save myself from walking that path.  Here's are some thoughts for those who are playing the waiting game:
  1. The question in my heart is always, what is going to happen with my kid, which side of the odds will we fall on.  My husband finally said to me, odds don't matter with a single person, it is either yes, or no, a binary solution.  I had a lot of trouble letting go of the odds, but I finally had to, because when it comes to an individual, it isn't about odds anymore.  My youngest is a heard healthy 25 week preemie, her odds were 57% that she'd have a moderate to severe neurological impairment or death.  Not to mention the other issues with gut, lungs, etc that come with extreme prematurity.  There is an actual calculator for this, btw.  You plug in specific circumstances and it tells you the odds for those circumstances.  They clearly say, not intended to predict individual outcome, but it is hard not to let your mind go there.  The reality was my baby sailed through the NICU, grew out of the fetal state and came home.  She has some minor lung issues, but nothing major, she's a little miracle... statistics don't predict individuals, they don't tell you how an individual will respond to their environment, situation or anatomy.  A lot depends on your kid.
  2. People are more likely to post their concerns and pain than their joy.  So, you're going to see a disproportionate amount of pain.  Also, when people post joy, you smile and move on, you're not as  likely to make a strong mental note.  I don't remember how many parents updated to say their child had a successful procedure in the week before my son's open heart surgery.  I do remember 8 babies were lost and I STILL think about them regularly.  
  3. I think, what you are searching for, is what you can do to best insure a positive outcome for your child.  Here's what I know:
    1. Volume matters when it comes to surgical and recovery outcome: http://www.mindthesciencegap.org/2012/03/08/when-it-comes-to-heart-surgery-sometimes-quantity-is-quality/
    2. If a hospital doesn't openly post their statistics, I start to worry. In my experience good hospitals aren't afraid to post volume, outcome and details. http://www.childrenshospital.org/heart-center/volumes-and-outcomes
    3. Reputation has some bearing on decisions, but can't be the only decision. http://health.usnews.com/best-hospitals/pediatric-rankings/cardiology-and-heart-surgery
    4. Surgeons are not equal and they generally have skills that suit them more for some defects over others (with a few true rock stars). You need to ask for your surgeon's specific statistics for outcomes for the specific procedure, needed revisions and follow ups, as well as their level of confidence on the outcome. Also, all parents think the sun rises and sets in the surgeon who saved their child's life. It is hard to find one who second guesses a successful outcome, but even knowing that, it is still worth asking around. Here's a great article from CNN on finding a great pediatric heart surgeon: http://www.cnn.com/2013/08/03/health/cohen-heart-surgery/
    5. Second opinions are always worth getting: http://www.chdknowledge.com/2012/10/getting-second-opinion.html
I hope this is in someway helpful.  Also, know that because we are imagining all the possible paths, waiting and anticipating the future is often far more difficult than walking the path as it comes.

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