Wednesday, April 11, 2012

Fired Up. Yet Again.

After the Arizona House of Representatives passed HB 2036 yesterday, I felt inclined to write Gov. Brewer and express my concerns over this bill and the far-reaching negative effects it has on our state.

Via Facsimile: (602) 542-1381

The Honorable Janice K. Brewer
Arizona Governor
Executive Tower
1700 West Washington Street
Phoenix, AZ 85007

Re: Request to Veto HB 2036

Dear Gov. Brewer:

I’m writing to you today asking that you veto House Bill 2036 which precludes termination of pregnancy after 20 weeks gestation. My reasons for requesting your veto are based on personal experiences and to maintain a semblance of our state’s economic health. The significant implications in signing this bill, or allowing it to move forward, will have a detrimental effect on our state’s economy.

On a personal note, my daughter was diagnosed with a severe congenital heart defect (Hypoplastic Left Heart Syndrome or “half a heart”) at nearly 20 weeks gestation in 2010. At that time, our perinatologist advised us that immediately following birth, our daughter would require immediate open heart surgery to begin reconstruction of her heart. Altogether, she would require three open heart surgeries (at minimum) in order for her to survive. Hypoplastic Left Heart Syndrome (HLHS) occurs in 2 out of every 10,000 births and is generally diagnosed at or after a 20 week ultrasound; most congenital anomalies are diagnosed at Level II ultrasounds that occur subsequent to 20 weeks gestation. My husband and I were given three options: 1) to terminate the pregnancy ; 2) continue with the pregnancy and let our baby pass within the first few days of life; or, 3) opt for the risky three-staged open heart surgeries. While my husband and I chose to continue the pregnancy and elect the series of surgeries, we did consider termination given the quoted survival rates and extraordinary medical costs. If you allow HB 2036 to become law, you take away the option to terminate for families who are faced with such devastating news; instead they are left with no choice but to carry their baby to term knowing he or she will not survive. Such legislation is grossly inhumane.

From an economic perspective, congenital anomalies and birth defects cost the American public health system over 2.5 billion dollars each year. As many as one in 33 babies born in the United States has a birth defect, according to the Agency for Healthcare Research and Quality. By signing HB 2036, you will increase Arizona’s already burdened economic status. As you know, just days ago, KidsCare was reinstated after a significant lull due to a lack of funding. HB 2036 will drive KidsCare into the ground yet again, and potentially indefinitely. As an example, I’ve attached an abstract from 2011 regarding the inpatient costs and charges for surgical treatment of Hypoplastic Left Heart Syndrome. You can see that the costs are exorbitant and easily surpass the million dollar mark. My two year old daughter’s medical bills, to date, are approximately $2,000,000.00 and she’s not yet undergone her third open heart surgery.

Many children born with congenital anomalies are covered by AHCCCS, KidsCare, and/or ALTCS. By signing HB 2036, you will drive our Medicaid system into a dire situation. This bill will detrimentally impact Arizona’s healthcare and economic system.

For the past few years, you’ve signed the proclamation for “Congenital Heart Defect Awareness Week”. In your 2011 proclamation, a copy of which is enclosed for your reference, you state:

“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…”

That $449 million dollar figure will double if you sign HB 2036. Research nationwide shows a 50% termination of pregnancy rate for children diagnosed with critical congenital heart defects. While I did not, nor would I ever choose to terminate one of my unborn children, I do not feel that taking that option away from a parent who will face significant consequences (emotional, financial, physical, etc.) is appropriate – particularly when our state is not able to provide financial assistance to those same families once their child is born.

This bill has insurmountable gray areas that cannot be ignored. Please, for the sake of mothers and fathers in our state and our economic health, you must VETO HB 2036.

If you have any questions or would like to discuss my personal experiences further, please do not hesitate to contact me.


Stacey L. Lihn


  1. I'm not saying whether I agree or disagree with you because to be honest I'm not sure but in your letter you talk about taking away the parents right to terminate and force the parents to continue knowing that their child will not survive...we were told termination would be our best option. We now have a thriving 2 year old. Something to think about as opposed to saying that they'll be forced to carry a child who will not survive

  2. Anonymous,
    If a parent wishes to terminate a pregnancy but is prevented from doing so due to arbitrary deadlines, they will likely choose compassionate care. My commentary is based upon my personal experiences with my daughter's lethal condition, hence, the wording "such devestating news" at the end of that sentence. Our situation sounds much like yours. Our OB recommended termination and we chose the alternative. As you can see, our near two year old is not only surviving, but thriving. I've written letters to my former OB informing him that he should give parents HOPE instead of creating more fear and devestation. I am the President of a non-profit who gives HOPE to families who've been given a diagnosis of HLHS. My point is simply that not all parents should have to chose this same path - it's been incredibly difficult both emotionally and financially. I know marriages who've ended and families suffering from taking our same path. No one should be forced to travel this path because of someone else's religious views. All of this is to say that I don't disagree with you but I don't think that we (you and I) should believe that everyone should make our same decision. The world is certainly not black and white; nor should our decisions be.