Thursday, January 10, 2013

Is What We're Asking For Really Too Much?

A friend of mine recently put together some word pictures about Trisomy 18.  The first is a traditional medical view of it.  The second is a parental view.  The third is a balanced approach.  Balance, what everyone says we need in life.

The fact is that many, many children who have three of the 18th chromosome can't live.  Many don't even make it to delivery alive.  The way their bodies read the extra code just won't support life.  However, just because some can't live doesn't mean that none should live.

As parents, we really aren't asking the doctors for miracles.  Although many of us storm heaven's gate for them, we don't look to science to provide them.  What we want from the medical profession is support, help.  We haven't been to medical school.  And we don't know all the treatments that are out there.  We need their help, their knowledge and expertise, to help our child thrive.

The same way you don't hold back an athletic star just because their peers can't keep up, we shouldn't hold back the children who want to live, or their families.  Slowly, ever so slowly, things are starting to change.

In a newly updated overview of Trisomy 18 it is noted that while many pass away, 5-10% do live beyond one year.  And that "the major causes of death include central apnea, cardiac failure due to cardiac malformations, respiratory insufficiency due to hypoventilation, aspiration, or upper airway obstruction and, likely, the combination of these and other factors (including decisions regarding aggressive care). Upper airway obstruction is likely more common than previously realized and should be investigated when full care is opted by the family and medical team." (emphasis added by me)

In layman's terms, this means that breathing can be difficult (oh yeah, we've seen that) and should be looked into if the family wants full care.  Key words in my view: breathing, obstruction, FAMILY.  The doctors aren't living with these children.  And it's probably hard for them to see the joy when they only see them when they're struggling and sick.  But there is joy, so much joy that is brought by these little, perfect spirits.  

If you're up to reading the article, you might see a really cute, familiar-looking kiddo there.  I'm kinda partial to him.  Here's the link to it. 

It's been pretty incredible, even in Aaron's short life, to see how many more babies are being offered interventions, how many more doctors are seeing our miracles as worthy of life.  

But the question begs, is it really too much for a family to ask for full support for a child?  Without that definitive diagnosis that make them "incompatible with life," all support would be given.  Should a label really have that much influence? 

We're here to make a dent in the universe. 
Otherwise why even be here?  
- Steve Jobs


  1. Loved reading this. You have such a good point. I wish all doctors would read this... What a string miracle you have.