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.

<>; <>;
<>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>; <>;

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


  1. Well said Stacey! This legislation is absolutely ABSURD on so many levels....You can bet that I'll be sharing your post with lots of AZ friends.

  2. Very well said!! I am in complete agreement!! We lived 4 hrs away from the children's hospital when I had Justin, but because we knew before he was born, we were able to deliver at the hospital attached to the children's hospital, I had childcare arranged for my oldest, had money reserved, etc!!! We had to rush him back at 3 mths and that was SUCH a circus, I now have money in an acct in case that circumstance arises again, and with our HLHS babies, and other children with any sort of anomaly, it can happen at any moment without any warning. I pray my state never tries to pass a law like this because it would be a horrible tragedy and I would fight it tooth and nail!!