Tuesday, March 13, 2012

Response from Sen. Nancy Barto

Many of you read my Open Letter to Senator Barto regarding opposition to SB 1359.  I received a response from her personally within an hour or so.  Read Sen. Barto's response below, and my reply in kind:

Response from Sen. Barto:

Dear Mrs. Lihn,

Thank you for commenting on this important legislation, SB 1359 - civil liability; wrongful life; birth, and for sharing your family’s experience with your daughter’s Hypoplastic Left Heart Syndrome.

I believe a lot of misinformation has been circulating regarding what this bill actually does in regards to changing appropriate current medical prenatal practices and the expectation that they should not be undermined. In short, the bill does not allow a change to a lesser standard of care.

First, physicians cannot “lie to women” as critics are claiming. Medical professionals who intentionally or knowingly withhold information from prospective parents may still be sued for gross negligence under this bill. That would include not performing or offering to perform tests that would be considered standard medical care during the course of a woman’s pregnancy.

Second, it is common sense to ensure in law that a physician who has done absolutely nothing wrong is not subject to lawsuits because a child was born – with or without a disability.

Sometimes diseases and abnormalities are not obvious through tests and nobody is “at fault”. It doesn’t make sense that physicians remain in the legal crosshairs because some parents think someone ought to be. In light of the nation’s serious physician shortage anything states can do to make the practice of medicine more practicable and fair, while maintaining due process recourse for true malpractice and gross negligence, should be pursued.

My best to you and your daughter as you strive to provide the best possible medical care for her.

Thank you, again, for your e-mail and comments.

Nancy Barto
Arizona State Senate
Chair, Health Care and Medical Liability Reform Committee
602-926-5766

Reply to Sen. Barto:

Ms. Barto,

Thank you for your response. While I respect your opinion, I must disagree. I understand the standard of care, however, the inherent language of this bill will unequivocally lower the existing standard of care. Anytime you remove the ability to pursue civil action for an act or omission pertaining to medical care, the standard of care, related to that same care is unquestionably lowered. Period. If a physician is not held accountable for finding the most severe of defects, they will be more lax in their diagnostic skill. I am no stranger to the legal terms "gross" and "intentional" negligence which bear argument in the court of law. As you know (or perhaps you don't), the burden on the plaintiff in a medical malpractice case, with burdens of gross and/or intentional are almost unobtainable in civil court and would require patent evidence of a physician overtly lying or concealing diagnostic evidence. Why raise the burden so high that your constituents, citizens of Arizona, and their fetuses are subjected to increased risk as a result of reduced civil liability and the accompanying fleecing of the check and balance system that our Country's government was founded upon? 

You and I both know that physicians are not permitted to "lie" to their patients, however, why are we giving them an out to do so? The existing burden of proof, applicable in medical malpractice cases, mandates that "[t]he health care provider failed to exercise that degree of care, skill and learning expected of a reasonable, prudent health care provider in the profession or class to which he belongs within the state acting in the same or similar circumstances." As Arizona statutes require, a plaintiff cannot successfully proceed with a medical malpractice action unless they have an affidavit from another health care provider, in the same specialty as the defendant, which states, under oath, that the defendant fell below the standard of care. That requirement, in and of itself, quickly eliminates meritless lawsuits. 

Further, the fact sheet for your bill, and accompanying research are completely void of any research or statistics regarding the number of wrongful birth and wrongful life suits filed in Arizona. I can tell you that from 1999 to 2006, only 2,185 medical malpractice lawsuits were filed in Maricopa County, an average of roughly 273 a year. Of those, how many are wrongful life or wrongful birth cases? Likely very few - not exactly an epidemic that justifies putting the health of mothers and fetuses at risk with a redundant and unnecessary bill. The existing medical malpractice laws already place an extreme burden on plaintiffs and have enough mechanisms in place that meritless suits are quickly disposed of. As a practical matter, however, because of those same requirements, the costs of malpractice suits are so high that most attorneys won't pursue a suit unless it has clear merit and high damages. The average malpractice suit costs between $50,000 to $100,000 to prepare, not including trial. Medical Malpractice: The Prognosis, Arizona Attorney, February 2007, Page 16. Why allow wiggle-room for physicians to exert their political choice (pro-life) on a mother?   

The situation is much more dire than simply protecting a physician from a lawsuit, which I would submit, they are already suitably protected from given the existing medical malpractice legislation. 

I am not suggesting that the burden for medical malpractice cases be lowered, I am simply stating that there are adequate mechanisms in place to protects against the very small number of wrongful birth and wrongful life cases files in Arizona courts. In the context of a cost-benefit analysis, the cost overwhelmingly outweighs the benefit. I hope you and your colleagues realize this. I stand firm in my opposition to SB 1359.

Thank you for your kind words in regards to my daughter and her care. She is an incredible blessing in the lives of our family and so many who know her.

Stacey Lihn

Friday, March 9, 2012

Open Letter to Sen. Nancy Barto

Over the past few weeks, I've bit my tongue on several topics in the political arena.  I cannot, however, on the latest legislation which recently passed the Arizona State Senate - SB 1359.  The purpose of the bill is to limit medical malpractice lawsuits, however, at the same time, the bill would allow doctors to withhold information from women carrying a child with a congenital anomaly, or any prenatal issue, to "prevent abortions."  There are so many things wrong with this bill, but I'll only touch on the one that hits closest to our home.

My outrage of this bill incited me to write Nancy Barto regarding her sponsored bill.  I copied all members of the Arizona House of Representatives since they will soon be tasked with voting on this bill (March 15th).  If you'd like to write your legislators in a similar fashion, I encourage you to do so.  Share your story and how a prenatal diagnosis changed your life, and the life of your child.  To find legislators, go to the Arizona Legislative website or feel free to copy all legislators, as I've done.

<info@nancybarto.com>; <nbarto@azleg.gov>;
<plovas@azleg.gov>; <jharper@azleg.gov>; <cash@azleg.gov>; <eableser@azleg.gov>; <lalston@azleg.gov>; <barredondo@azleg.gov>; <bbarton@azleg.gov>; <kbrophymcgee@azleg.gov>; <chcampbell@azleg.gov>; <hcarter@azleg.gov>; <hcarter@azleg.gov>; <tchabin@azleg.gov>; <scourt@azleg.gov>; <ccrandell@azleg.gov>; <jdial@azleg.gov>; <kfann@azleg.gov>; <sfarley@azleg.gov>; <efarnsworth@azleg.gov>; <jfillmore@azleg.gov>; <tforese@azleg.gov>; <rgallego@azleg.gov>; <sgonzales@azleg.gov>; <dgoodale@azleg.gov>; <dgowan@azleg.gov>; <rgray@azleg.gov>; <ahale@azleg.gov>; <mheinz@azleg.gov>; <khobbs@azleg.gov>; <rjones@azleg.gov>; <pjudd@azleg.gov>; <jkavanagh@azleg.gov>; <dlesko@azleg.gov>; <ddavis@azleg.gov>; <mmclain@azleg.gov>; <jmesnard@azleg.gov>; <emeyer@azleg.gov>; <cmiranda@azleg.gov>; <smontenegro@azleg.gov>; <jolson@azleg.gov>; <lpancrazi@azleg.gov>; <dpatterson@azleg.gov>; <jpierce@azleg.gov>; <fpratt@azleg.gov>; <tproud@azleg.gov>; <mquezada@azleg.gov>; <areeve@azleg.gov>; <brobson@azleg.gov>; <msaldate@azleg.gov>; <cseel@azleg.gov>; <dsmith@azleg.gov>; <dstevens@azleg.gov>; <atobin@azleg.gov>; <atovar@azleg.gov>; <atovar@azleg.gov>; <mugenti@azleg.gov>; <surie@azleg.gov>; <tvogt@azleg.gov>; <jweiers@azleg.gov>; <bwheeler@azleg.gov>; <vwilliams@azleg.gov>; <kyee@azleg.gov>;

Ms. Barto,
I'm writing to you as mother of a child born with a severe congenital heart defect - Hypoplastic Left Heart Syndrome. At 18 weeks gestation, I learned of my daughters "half a heart" and was devastated. This information did not entice me to run out and get an abortion (as you would like to think). To the contrary, it gave me 22 weeks to plan for her birth, plan for her survival and plan financially for our family. We sought the best medical care, as her defect would prove fatal, without proper medical intervention, after a few days of life. I might add, her heart defect does not rear it's ugly head and is often missed upon birth as symptoms of her defect do not present until days 3-5 of life, when most babies are already discharged home. Any pediatric cardiologist or pediatric cardiothoracic surgeon in Arizona will confirm that fact. Needless to say, but for a prenatal diagnosis, my daughter likely would've died at home of an undiagnosed heart defect.

I understand the purpose of your legislation, however, you MUST not ignore the flip side - the thousands of children you will impact (i.e. kill) with your legislation. Governor Jan Brewer, whom I will copy with this correspondence, proclaimed the week of February 7 - 14, 2012 as Congenital Heart Defect Awareness Week. In that proclamation, she stated the significant impact that undiagnosed heart defects and the prevalence of such defects have on our state. With your bill, you are mandating the exact opposite of awareness and education. With your bill, you allow physicians, not parents, to choose how to care for their unborn child (if they survive birth or the first week of life, at all, given their anomalies).

With a prenatal diagnosis, relayed by the physician conducting my ultrasound, my daughter was allowed to live. She was able to undergo two open heart surgeries (the first at 15 hours old) in an effort to save her life. Cardiothoracic surgeons at Phoenix Children's Hospital perform these same life-saving procedures on hundreds of children - but they can only do so, with optimal outcome, when a prenatal diagnosis is made. If parents are unaware of such a diagnosis, they cannot plan ahead and will be faced with an emergent and potentially fatal outcome for their newborn. Without information provided by a prenatal provider (which, I assume, is the ultimate purpose of prenatal care), they cannot provide their child their best life possible.
I'm sorry, but I am in complete opposition to your bill and I will speak out, with the help of hundreds of other congenital heart defect parents who live in the State of Arizona, in public forum.

Your political views on malpractice lawsuits will not trump my right as a parent to be able to provide the best care and outcome for my child. And, it most certainly will not allow you to choose death for my daughter.

Sincerely,
Stacey Lihn

Wednesday, March 7, 2012

It's March Already?!

Seriously, where has the time gone? 

The girls are growing up way too fast.  Emmy will be four in May and Zoe is turning TWO!  Our lives are truly incredible - which relates to both the ups and downs of our lives.

Zoe is doing amazingly well.  Her physical therapist is very pleased with her progress.  She ran after Emmy yesterday, the first time I've seen her "run."  Her next cardiology visit is in a month's time - April 13 - and I'm holding my breath as this will be her first echo since July of last year.  No pressure!

Even though it's cold/flu season, we've been able to take the girls out for some fun.  They love the Phoenix Zoo and we even let Zoe ride the carousel.  Pretty sure some of the parents were wondering who the classic OCD parents were wiping down every square inch of the porcelean elephant Zoe was about to mount. 



The girls love being outside together and enjoying being sisters.  I'm so blessed by these two.





Since Emmy's been pent up for so long, we enrolled her in ballet classes.  She loves to "plia and straight" and run around on her tippy-toes like a princess.  During her last class, family was allowed to attend.  As you can see, Zoe had no trouble catching on and wanted to join in on the fun.




And one last picture of Zoe at the zoo.  I'm pretty sure she's looking back at me saying, "Yeah, I can take that Komodo Dragon!"  Given all that Zoe's endured in the past 23 months, I wouldn't be surprised if she wrestled him into submission...


 (Zoe v. Komodo...)

Sunday, February 19, 2012

Remembering Travis

A year ago today, we lost one of the brighest eyes and strongest men this planet knew.  This man was a mere 16-months old but had endured more pain and suffering and joy than any man I know. 

Meet Travis Gary DiCarlo.


Travis passed away following open heart surgery.  Even though Trav's mom is one of my dearest friends, I was stunned to read a line from her blog this morning:

"I gave up my last chance to hold my baby so that his organs could help someone else."

As a heart parent, we tout how significant organ donation is.  As a human being, we should all read Travis' mom's words over and over and over again.  She GAVE UP her last chance to hold her son so that the placement of his life support (ECMO) would remain in tact and his organs not be compromised for someone else's child.  I cannot even comprehend the magnitude of that statement. When it comes to children with congenital heart defects passing, which unfortunately I am no stranger to, my mind simply freezes.  It's paralyzed.  It's a defense mechanism for me.  So much so, that I cannot even continue with this train of thought...

For Travis' 'angelversary', all of us at Sisters by Heart created an event to celebrate Travis' life and the impact he had on our world.  We engaged the heart community and family and friends to help us send red balloons with rememberance tags into the sky across the country.

A few of the Rememberance Tags with one of the sweetest faces I've ever seen....



And our emotional balloon release for Travis...


(Travis' spirit surrounding Zoe during our photo shoot)

(Zoe releasing her balloon)




To visit or participate in the event "Balloons for Travis" and see photos from across the country, visit http://tinyurl.com/balloonsfortravis.
Take a moment and cherish your loved one's today.  Hug them and let them know you love them.  Life is too short... all we have is the present moment.


Monday, February 6, 2012

Arizona is stepping up...

Even though my political views may differ vastly from many politicians in Arizona, I have to say that Governor Brewer stepped up and supported something I hold with the utmost importance.

Several weeks ago, I wrote the Governor asking her to acknowledge the prevalence and impact that Congenital Heart Defects have on Arizona families.  Much to my delight, I received a proclamation in the mail a few days ago.

This week, starting tomorrow (February 7th through February 14th) has been proclaimed Congenital Heart Defect Awareness Week.
 

The text of the proclamation is simple, yet significant:

"WHEREAS, congenital heart defects are the most frequently occurring birth defects and the leading cause of birth defect related deaths worldwide; and

WHEREAS, over a million families across America are facing the challenges and hardships of raising children with congenital heart defects; and

WHEREAS, every year 40,000 babies are born in the United States with congenital heart defects; and


WHEREAS, some congenital heart defects are not diagnosed until months or years after birth, causing many cases of sudden cardiac death in young athletes who have not been diagnosed with congenital heart conditions; and

WHEREAS, in 2010, there were 2,783 hospital admissions in Arizona of infants with congenital heart disorders; and their hospital charges amounted to $449 million; and

WHEREAS, despite these statistics, newborns and young athletes are not routinely screened for congenital heart defects, with a disproportionately small amount of funding available for congenital heart defect research, parent/patient educational services and support; and

WHEREAS, Congenital Heart Defect Awareness Week provides an opportunity for families whose lives have been affected by congenital heart defects to celebrate life and to remember loved ones lost, to honor dedicated health professionals, and to meet others and know they are not alone; and

WHEREAS, the establishment of Congenital Heart Defect Awareness Week will also provide the opportunity to share experience and information with the public and the media, in order to raise public awareness about congenital heart defects.

NOW, THEREFORE, I, Janice K. Brewer, Governor of the State of Arizona, do hereby proclaim February 7-14, 2012

* CONGENITAL HEART DEFECT AWARENESS WEEK*

and encourage all citizens to increase awareness, education and services for congenital heart defects, which each year affect thousands of babies in Arizona."


And, for my Congenital Heart Defect "baby", who gives me new purpose and meaning...

I love you Zoe Madison and will fight the most stubborn of politicians so your voice can be heard!!!

Zoe, at the beginning of her battle with Hypoplastic Left Heart Syndrome


Zoe, today, half a heart and living well!

Thursday, February 2, 2012

Sunsets

This past week we've seen some beautiful sunsets.  Zoe loves when I spot one out the back window, she knows she's gonna get to go "outsiieeeeddee!"

She certainly doesn't hide her excitement!



And a few more, just because she's so darned cute - and the sunsets rock!




I cannot stand her cuteness!

Saturday, January 21, 2012

Crazy Days

It's been far too long since I posted... My apologies.
All is wonderful in the land of Lihn.  We're busy beavers - traveling, filming (yes, more to come on that later), living and working. 

We took Emerson to the Polar Express this winter and she LOVED the fresh snow!

Sledding at Northern Arizona University

The holidays involved some sick little girls and our New Year was spent up north at my parent's cabin.  A three day weekend away in the pines felt just right - and Zoe had no issues with the hightened elevation.


Between work, nonprofit adventures and family (in no particular order!), I've been beyond swamped - hence the month-long hiatus.

Zoe is not due to cardiology until April and we're hoping that appointment will give us good foresight for her final staged reconstruction, the Fontan (intracardiac, fenestrated lateral tunnel for those in the know).  It's hard to believe that Zoe is 17 months post-op already.  When the doctors told us that "Post-Glenn" was a time to relax, breathe and enjoy, they weren't joking.  It's been wonderful; we're so blessed to have a fairly uncomplicated post-hemi fontan journey.

Looking ahead is scary... so I won't.  At least not now, not today.

Emmy began ballet this past weekend.  She surprised me by being a great student.  I had no baseline to compare to, because she's been reclusive since Zoe's birth (not by choice).  She raised her hand, answered questions, followed Miss Suzie's directions and participated with all the little ballerinas.  Although, after just one 30 minute ballet class, I'm convinced she's built more like a soccer player than a ballerina. 

Showing off her new moves
As cold and flu season is beginning to hit hard, we'll likely be staying close to home for the next month or two.  We've already begun entertaining ourselves in the house - Dad mimicks a pretty great roller coaster via Costco Baby Wipes.


Until next time...

Live, laugh and love well,
The Lihns