Friday, March 23, 2012

Big Time Progress

There is much to celebrate in the Lihn house as of late.

In big-time news, Zoe graduated from physical therapy!  Yep, she's now age-appropriate in her development and her physical therapist feels that she'll only continue to improve and strengthen as she grows.  We're looking into orthotics from a potentially shorter left leg due to the femoral clot she suffered at three weeks of age, but other than that, her development is great! 

In July, we'll be trekking back to Philadelphia for Zoe to take part in the NeuroCardiac Care Program at CHOP.  It's a fairly new program (not offered west of the Mississippi) that takes several areas into account for children with critical congenital heart defects.  Specialists in cardiology, neurology, nutrition, speech and physical therapy will evaluate Zoe.  We're looking forward to her assessment and information that will only help us better prepare her for school.  We're pretty confident she'll get a two thumbs up, but we'd like to hear it from the experts' mouths.

As many of you know, Caleb had surgery on his Achilles a few weeks ago. He's been doing really well and his surgeon is impressed with his healing (shout out to Reiki...) I took a picture of his ankle after the wrap was removed at his last follow up appointment. It's pretty Frankenstein-ish. I told him I was going to post it and he thought it was too gross. I said, "What? We've put up photos of Zoe with her chest open- how is this any more insulting?"

I win, here you go...

He's now walking with a boot and was even cleared to ride a stationary bike today.  Woot!!!

And, I cannot end this post without wishing a Happy Birthday to Jacob Baker and the Affordable Care Act - you've both had a tremendous and profound impact on my life - and you were born on the EXACT SAME DAY! ♥ 

Here is Jacob - two years old and kicking HLHS butt everyday!

And here is the ACA - saving lives and offering hope.  (Don't miss Zoe's appearance!)

Thursday, March 15, 2012

A Visit from Obama 2012

Word has spread, or should I say video has spread... about Obama 2012 coming to visit us in Arizona.  A few months ago I received a phone call from a woman working with Obama's campaign.  We talked for the next several days, at length, regarding Zoe and our family's reliance on the Affordable Care Act.

I shared with her several statistics that were utterly shocking to her.  The first, and most importantly, that Congenital Heart Defects occur in one out of every 100 live births.  Take that stat for whatever it means to you, but for Obama 2012, it means that 1 in 100 babies are born with a pre-existing condition... and a pricey one at that! 

After phone calls back and forth and some logistical planning, two members from Obama's team flew to Phoenix and spent a few days with us.  We shared our journey with Congenital Heart Defects, the enormous relief we felt knowing that the Affordable Care Act was signed just a few months before Zoe's birth and truly became friends with both Obama's producer and photographer.

Yes, I voted for Obama in 2008, and will again in November, but my purpose in filming our family's story was not politically motivated.  We agreed to film our story because we whole-heartedly believe (and know) that the Affordable Care Act will not only save Zoe's life, but the lives of thousands of children around the country with similar heart defects.  Our country desperately needs healthcare reform.  The misconceptions about the Act and who it helps and doesn't help has been a source of anxiety and frustration for me for two years now.  Quite simply put, if you're an American citizen, it will benefit you!

If you don't believe me, visit this 'calculator' and see for yourself!

Heck, I consider myself fairly well-versed on the Affordable Care Act and even I learned something new.  "By 2014, all insurance plans will cover maternity benefits—and your insurance company won't be able to charge you more than a man for the same policy."

Thank you Obama 2012 for allowing Zoe's voice to be heard throughout America.

If you've yet to see the video, you can view it here:

The girls enjoyed the experience just as much as Caleb and I.  I, of course, had to document the filming, since it was a once-in-a-lifetime opportunity.

And, one last picture that is important to share...

Get out and vote Obama in November - if not for yourself, do it for Zoe and her fellow heart warriors!  We need a President in office that understands the importance of caring for our children, our parents, our selves and our fellow American.

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

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.

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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.

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...)