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 it is not a leading cause of infant death. In the U.S. where we are fortunate enough that our infants are dying from sepsis and diarrhea (as the link provided reveals.) CHD is one of the leading causes of infant illness and mortality.

Thursday, March 16, 2017

Poetry. I don't know what else to do... I miss you seven years later my love. Your birthday is always a joyful time, even if I am welling with tears sometimes as I mark the day. Joy is the calling. It's supposed to be because death is conquered.  But let's just say, it doesn't feel that way to my heart. Hearts and minds don't always align. But I still know to go seek joy; if anything, I'm more convicted from your lifetime here - of how joyful we are not tended towards. How we miss it... I'm thinking of Our Town, and the end of the play (I think that's when the conversation happens). I don't want to miss it. I'll keep trying. Because love instructs well. And simply. And clearly. Unfailing.   

Last Night the Rain Spoke to Me

by Mary Oliver

Last night

the rain

spoke to me

slowly, saying,

what joy

to come falling

out of the brisk cloud,

to be happy again

in a new way

on the earth!

That’s what it said

as it dropped,

smelling of iron,

and vanished

like a dream of the ocean

into the branches

and the grass below.

Then it was over.

The sky cleared.

I was standing

under a tree.

The tree was a tree

with happy leaves,

and I was myself,

and there were stars in the sky

that were also themselves

at the moment

at which moment

my right hand

was holding my left hand

which was holding the tree

which was filled with stars

and the soft rain –

imagine! imagine!

the long and wondrous journeys

still to be ours.


Happy 7th Birthday, Gwenyth. I miss you in my arms. In our lives. I remember the joy of the day you were born. (One day we'll post the video. I know I will one day.)

Wednesday, January 11, 2017

Don't wanna get into it...but I did. And I'm done. But here it is.

Skepticism isn't a bad thing. In fact, I believe it's good for science -- at its root, ultimately and ideally, is curiosity. So as this news spreads let's remember the facts:

Robert Kennedy Jr. himself, said:
“I’m pro-vaccine. I’ve had all six of my kids vaccinated.”

Most headlines today seem to have it incorrect if we are to believe Robert Kennedy's own words that he is NOT anti-vaccine. Personally, I believe this mischaracterization could be harmful at worst and deeply confusing to the conversation, at best. 

To correctly characterize RFK's stance (which I believe Is important and worth the time to do to help those on the fence avoid being guided by misinformation) he is a pro-vaccine skeptic who has issue with CDC integrity....

Short summary (if I understand correctly) - RFK specifically has issue with the CDC's science (research) and has concerns only about the recommended schedule and the ingredients of vaccines. It is worth keeping in the front of our collective minds that RFK Jr. truly believes vaccines are important and that they save lives.

His pro-vaccine stance is modified by this statement:  “I think we ought to have state and federal policies that maximize vaccine coverage of the population. But I think we have to begin the process by making sure the vaccines are safe, efficacious and that the regulatory agency which recommends vaccines … and monitors them has integrity and credibility, and, unfortunately, that is not the case at the moment.”

(Essentially, from what I understand, RFK Jr believes the CDC is potentially corrupt and not producing good science due to conflict of interest. There's a lot to unpack there but I'm gonna leave it at that.)

So, RFK Jr. finds that all the scientific studies by the CDC (he mentions nothing else about vaccine safety studies elsewhere) do no live up to his standards. As I see it, with RFK Jr. being a prominent public figure and the assumption, that based on what he didn't like about previous studies he will design studies that he can fully get behind and, being that the stakes are so high, I say go for it... I trust firmly that on the "other side" of his panel (should it be formed) and their approved research, Kennedy and other pro-vaccine skeptics will sleep better at night and the bigger picture, more children and adults will be spared these diseases, which makes it worth it to me.

I'm aware some folks out-there believe everyone should build their immunity naturally... and that's a different stance than the skeptical pro-vaccine bunch. And I'm sure they're are a zillion other reasons why some will still stand (and always stand) against having their child receive vaccines... and that's not with whom this issue lays.

Other important facts I feel are worth considering:
Multiple respected medical groups and organizations stand by the most current research that concludes there is no relation between autism and vaccines. The research that concluded there was such evidence was debunked and removed from the Lancet.

Autism Speaks links to this article:
And this video:

Now, sadly, what muddies the water is the fact that Kennedy historically is quoted as saying some anti-vaccine leaning and frankly seemingly anti-vac supporting things, which I believe, when we read these statements we need to read and then say out loud ... "he vaccinated all six children."

To further ensure this fact, here's what he told a reporter after his meeting with Trump.

"I am for vaccines. I have been tracking mercury in fish for 30 years and nobody has called me anti-fish. I am pro-vaccine. I had all my kids vaccinated. I think vaccines save lives. But we are also seeing an explosion in neurodevelopmental disorders and we ought to be able to do a cost benefit analysis and see what’s causing them. We ought to have robust, transparent science and an independent regulatory agency. Nobody is trying to get rid of vaccines here.  I just want safe vaccines."

So again - his issue seems to be with the integrity of the CDC specifically.

Should we spend money on this as tax payers?? As I said, I am for it if nothing else to lay this issue to rest once and for all (am I skeptical about should this panel concur with the myriad of studies that support the current contents and recommended schedule of vaccines are safe this issue would be laid to rest...? Yes, very skeptical (jaded?). But I'm an eternal optimist I guess...and just the mere thought that maybe ...just maybe it would put this to bed it seems worth it).

And finally, no. I wasn't born yesterday. I don't think we ought to blindly trust the information available to us....goodness no.

But...I like how this writer explains where I land on this issue so well: "Vaccine skeptics often point to that alleged connection between vaccines and autism, in which a preservative called thimerosal is a chief culprit. But that link has been studied and debunked so many times that for it to actually exist, the medical and public health community would have to be engaged in a coverup conspiracy of global proportions."

I can't dignify Trumps comments - I just can't stomach him (sorry to those who are fans...we all have our points of view...and I am just can't ... too many issues with him in my book...). I don't know a ton about RFK, I certainly have some opinions based on the little bits I know from the media, however I am far more willing to hear him out and listen to what he has to say as he has a proven record of doing something good for humanity -- I grew up near the Hudson River and Kennedy's impressive work there stands out to me.

"Through the actions of the Hudson Riverkeeper and others, the Hudson River has become an international model for ecosystem recovery. Spurred by this tremendous success, Kennedy founded the Water Keeper Alliance to support approximately 75 Keeper organizations. He serves as President of the organization."

Finally, because I don't really get it all and I found this helpful here is some vaccine info from the CDC (granted this is only useful if you trust the CDC...but I'm outta time)

Lastly the news articles I quoted above:

Not quoted here, but read in November and in my head as I read today's headlines:

Sunday, April 17, 2016

A Saddend Heart

This has been exactly my thought and kinda the end of where all my grief always leads - that if we can love this much and love is from God -- then, wow...

"What a proof of the Divine tenderness is there in the human heart itself, which is the organ and receptacle oft so many sympathies! When we consider how exquisite are those conditions by which it is even made capable of so much suffering--the capabilities of a child's heart, of a mother's heart,--what must be the nature of Him who fashioned its depths, and strung its chords."

 -Edwin H Chapin

Today I write as I mourn two losses here, in our little CHD world.

On Friday, my shining star, the child who showed me the life Gwen could have, whose mom walked so closely with me and helped me find solid footing as I planned surgery for my unborn daughter...on Friday, April 8th, Gabe Chester died.

(These words here are not what I want on this blog. I don't want to keep typing.)

It was sudden. He was enjoying his time skateboarding. All we can guess is his heart just was done - arrhythmia struck and it won (thankfully he was at a middle school near his house and his collapse was witnessed and CPR and and AED were available quickly - and therefore all was done that could have been done).

On the following Monday, a precious 2 and a half month old baby boy, Andre Showalter, a HLHS CHD Warrior suddenly passed away.

Words fail. My heart aches for each family. I feel inadequate and lacking... all I know is each child was so loved... I know each family can all survive this loss -- but how desperately, desperately I don't want them to have to endure this type of heartahce. And there it is, the familiar limits, of being human - you can't do a darn thing about it, this is an ever expanding place -- and you can't do anything about who enters; at any time, it may be someone you call a dependable friend or some new family you've yet to meet but have cared for from a distance.

In both cases, nothing indicated any issue - both children were doing so well...

And I'm starting to wonder if that is more the norm in CHD land... "the plane falls out of the sky on a clear blue day..."

The landscape of CHD has been redrawn for me. Like minecraft creating a new map, I've landed in a completely new world. And for now, all I know to do is to keep to the task at hand, even as I don't recognize this place and my doubts are heavy and my mind weary, I will keep working here, on CHD awareness, on our new MLHSV projects and on all the tasks at hand, if only because I'm too knee deep in it and there isn't any way out now but forward.

But is there anything really we can do? Does research matter? - does God just have it all planned out and he is amused that I'm thinking anything is going to help these kids have longer lives?

I guess really, MLHSV isn't about research and I know trying to offer comfort and support and ultimately, confidence, matters -- to some degree anyway... so I'll keep at it... but the world - the landscape feels foreign and all wrong - these two families were never supposed to be over here...not here...on "this" side of things.

Monday, January 12, 2015

An Article Worth Sharing

Thank you Myers sharing, you found gold. Now I'm with you tonight..., I thought I could read it and keep a straight face so to speak ...but always I know, it's okay, because this is love, I feel this way be caused of love...and in some weird way I'm glad I can still crash this hard. We loved them. This is for the many people I know who are missing a loved one that was a big part of their life...It's an excellent article - spot on!

"She was just very sad, consumed by sorrow, but not because she was grieving incorrectly. The depth of her sadness was simply a measure of the love she had for her daughter.

.. To do so  [achieve closure] would be to lose a piece of a sacred bond.

I often tell them that the size of their grief corresponds to the depth of their love....

 Sadness, regret, confusion, yearning and all the experiences of grief become part of the narrative of love for the one who died."


And I know that by allowing that reality to be as it is, then I'm able to be with it rather than fight it...and it has less power to consume my soul in darkness and take me down completly.

So so so has been in my head that I want to write about grief...but there just isn't time...

But this article is a lot of what I've bee wanting to shout from the roof tops... Grief is horrible but it's human, it's a form of love -- it's deep sadness not depression... 

And no. I will neverbe able to make peace with the 20 / 20 hind sight and that too, does not mean I've failed to grieve right. The list is long...of real actions I could have done... and I'm not torquing myself with it. I'm living with it all --- the narrative. Because it's real and true and her story.

And this grief won't really change -- but  that's okay. I am familiar and friendly with it now. It's part of my daily existence and it is far less likely to exhaust me and crush me only because I'm more accepting of all aspects and wise to its ways. 

And always I know and remind myself -- it's because of love.

Wednesday, December 4, 2013

A Link Worth Sharing relating to CHD Awareness

 I tried to post a link to this article on FB but I received this message "The privacy settings for this attachment prevent you from posting it to this Timeline."

So...I figured out another way to share it, since it just annoyed me that it wouldn't let me place it on my FB wall...Here it is:

Environmental Toxins Linked to Heart Defects (One Study in Canada)
  "Congenital heart defect rates have gradually decreased in Canada since 2006, which is about the time the government tightened regulations to reduce industrial air emissions, Ngwezi said. The heart defect decreases were mainly associated with heart defects resulting in holes between the upper and lower heart chambers (septal defects) and malformations of the cardiac outflow tracts (conotruncal defects), according to Ngwezi.

" 'Although still in the early stage, this research suggests some chemical emissions - particularly, industrial air emissions - may be linked to heart abnormalities that develop while the heart is forming in the womb,' said lead researcher Deliwe P. Ngwezi, M.D., a Ph.D., student and research fellow in pediatric cardiology at the University of Alberta in Canada.

     The study is based on congenital heart defects diagnosed in 2004-11 and chemical emissions recorded by a Canadian agency tracking pollutants."

   For now, consumers and healthcare providers should be educated about the potential toll of pollutants on the developing heart,” she said. “As we have observed in the preliminary results, when the emissions decrease, the rates of congenital heart defects also decrease.” 
-- End of my pull-quotes --

I was just telling my mom today how this is something that got on my radar years ago while researching CHD's and here it is in the news today... (Gwen's defect, Truncus Arterious, was a conotruncal defect...and I have no clue if there was any environmental cause such as pollution...I quote this article because it is interesting, not because I think I suddenly have answers.)

It's not good news, but it is GOOD that it continues to be studied. As if it's not obvious - pollution is bad for our health, so I'm all for "greening-up" - it's beneath our intelligence as a species to not at the very least, TRY to lessen the toxic output of our way of living.