Sunday, May 14, 2017

Monday, May 8, 2017

I’m going to do it once…then be done. 

But - I’ve been thinking a lot about the “Kimmel Test” and preexisting conditions- and yes, it’s personal (but isn’t that where you learn a lot - when you are in the thick of it - when the unimaginable happens to you?).  

I’m looking at this week seven years ago — May 11, 2010, Gwen’s heart-buddy, Zoe Lihn was born at CHOP and had open heart surgery at 15 hours old. 

Three days later, back home in Virginia, at the local hospital while doctors were preparing her to get onto the helicopter to head to UVA because of some worrying symptoms, Gwen’s tiny-little heart stopped beating.

Zoe and her big sister Emmy
Am I supposed to feel like I dodged a bullet? 

Let’s get right down to it - were we fiscally irresponsible to choose to bring her into this world? 

After all, I learned of Gwen’s preexisting heart condition when I was 20 weeks pregnant. Zoe’s Congenital Heart Defect is Hypoplastic Left Heart (you can hear Nancy Pelosi share about Zoe here (at min 1.56).). Gwen’s CHD was Truncus Arteriosus. They are some of the most expensive CHDs

So again, I ask - should we be grateful that we “got off the hook” and here we are, seven years later and we don’t loose a single night of sleep worrying that we could go bankrupt because of our child’s healthcare needs should the healthcare law change? 

After Jimmy Kimmel shared a story all too familiar to thousands of parents, CHDs were suddenly in the spotlight and he mentioned correctly, his newborn baby's CHD, Tetralogy of Fallot, is considered a "preexisting condition."  

So the question began to echo - do kids born with CHD not get care if their parents cannot pay? 

The answer; it's more nuanced than that, and a little less grim (thank goodness). 

However, I encourage you to read this and you’ll see where CHD families are coming from… and why preexisting conditions are an huge issue, and why CHD families have the right to be concerned:
What Happened to Kids Like Jimmy Kimmel's Son Without Obamacare (The Affordable Care Act/ACA). Dr. Zahan also offers a excellent account of the "issue" surrounding preexisting conditions and CHD patients. (He is the Kimmel family's Dr. Spray. Dr. Spray worked on both Gwen and Zoe and thousands of others.*) 

And, this is very lengthy, but it’s all very well explained here. (In summary; Trump's claim that 'Pre-existing conditions are in the bill,' "glosses over the fact that the bill weakens the ACA protections against higher premiums and less-generous benefit plans." However, "Sen. Schumer, meanwhile, was wrong to say, that the bill goes 'back to the day when insurance companies could deny coverage to those with pre-existing conditions.' Insurers would still be required to offer plans to anyone regardless of pre-existing conditions, although they could in some circumstances charge higher premiums based on health status.")

As I see it - we should be honored to all pull our resources together to provide for these amazing kids (and all fellow citizens who face complex health issues.) 

We have amazing innovation and ability to save infants that used to die at birth…Do we want to go back to making them uninsurable?" According to, Linda Bergthold, "Doctors remember it as a terrifying time, many knowing patients who actually died for lack of coverage, contrary to what Rep. Raul Labrador said this weekend when he promised no one dies from lack of health care."

And so when you read things like this; "Empathy Distraction in Healthcare Debate"— I hope you will see, these are real stories, real families, real kids - not distractions.

And here’s where I land on this "issue" — because life, nope, it’s not fair - some kids are born with heart defects, some people have to pay for things they are opposed to; — no rose gardens here and no, definitely not fair; “Living in a civilized society means we all share in the cost and responsibility. Living in a civilized society also means we all pay for things we find morally objectionable – conservatives and liberals alike.

And finally, I just can’t get it out of my head that Trump mentioned he thinks Australia’s healthcare is better than ours. (He may have a point: "Australia's health care system is mostly funded by the government while relying on private health insurance for some services...")

“Whatsoever You Do” by artist Timothy Schmalz

Post Script Notes for further reading:
*These surgeons are busy - after all CHD is the number one birth defect in the world. In developing nations CHD is not a leading cause of infant death. In the U.S. where we are fortunate enough that our infants are not dying from sepsis and diarrhea (as the link provided reveals) CHD is one of the leading causes of infant illness and mortality.

Ten years loom and as always seems to be the case, I find myself struggling the most in the days ahead of the anniversary  - be it her birt...