Progress

So excited to say that today, June 27, 2013, Ohio Senate Bill 4 (what was known as the newborn pulse ox bill) was signed into law today by Ohio's governor!  Although I can't say I've had a huge part of making this bill become a law, I did contribute, and the small part I had in it made a much bigger impact on me.  It would have been icing on the cake to have gone to Columbus for the signing, but we were just invited yesterday and it has been a very busy week for us.  I'm glad we were there for the important days while it was in hearings.  I am proud of some things we've done in 2013.  All newborn babies born in Ohio will screened for critical congenital heart defects as a part of a routine newborn screen!  It appears that the director of health will specify the screening tools and methods (which for now the method is pulse ox testing and other/future tests have to be as effective as pulse ox screening if something is used).

In March I told our story at the Ohio Senate and in April at the House.  You can read that speech here.  It was definitely not as easy as I expected.  Despite rehearsing it several times, it was hard to stay composed when talking about the best and worst days of my life in front of state senate as my audience.  I wanted to make an impact, but at the same time I hate reliving there, the darkest of days.  It is not a pretty place, but I guess that is kind of the point.  Without scaring people, my hope was that they realized that CHD is not uncommon and happens to normal people, and that there is real importance that pulse ox screening has on real lives.  I'm a real person impacted by congenital heart disease, whose child was saved by observant nurses and pulse ox testing.  Seeing Sofia's bright and smiling face that day at the Statehouse reminded me of full of life she is.  A child who minutes before going to the Statehouse spilled her chocholate milk all down her shirt and skirt and tights.  A girl with a sweet smile and a broken mended heart.  She is really as much of a poster child as you can get for the importance of routine pulse ox screening: uncomplicated pregnancy, undetected critical congential heart defect. 

Sofia goes back to the cardiologist in August and the gastroenterologist in July.  I was talking with her cardiologist on the phone the other day and mentioned we are planning to go to Toronto in a few weeks and that we hadn't been there since Labor Day last year.  Matter of factly, he said that she's a different child since then.  Why yes, she is.  Last summer was a little rough, with her surgery in May.  It look her some time to become herself again, energy wise especially.  She's pink almost all the time now.  Sometimes I just stare at her lips, noticing how pink she is.  I never dwelled on her blueness and am convinced that it was less evident to people who knew her, but in retrospect, she definitely was more blue.

With the pulse ox victory, I wonder what will be next for us.  It's kind of put a little bug in me.  A little voice in the back of my head wondering what I can do next.  What advocacy efforts we will engage in next.  I'm not sure what route we will go, whether it is for children in general or more heart related, but I want it to always be a part of who we are.  Hearts will always be our thing, and we'll always be looking at the world through a different lens with such a special child.  She is a gift.


AN ACT

To enact section 3701.5010 of the Revised Code to require a critical congenital heart defects screening for each newborn born in a hospital or freestanding birthing center.

Be it enacted by the General Assembly of the State of Ohio:

SECTION 1. That section 3701.5010 of the Revised Code be enacted to read as follows:

Sec. 3701.5010. (A) As used in this section:

(1) "Critical congenital heart defects screening" means the identification of a newborn that may have a critical congenital heart defect, through the use of a physiologic test.

(2) "Freestanding birthing center" has the same meaning as in section 3702.141 of the Revised Code.

(3) "Hospital," "maternity unit," "newborn," and "physician" have the same meanings as in section 3701.503 of the Revised Code.

(4) "Pulse oximetry" means a noninvasive test that estimates the percentage of hemoglobin in blood that is saturated with oxygen.

(B) Except as provided in division (C) of this section, each hospital and each freestanding birthing center shall conduct a critical congenital heart defects screening on each newborn born in the hospital or center, unless the newborn is being transferred to another hospital. The screening shall be performed before discharge. If the newborn is transferred to another hospital, that hospital shall conduct the screening when determined to be medically appropriate. The hospital or center shall promptly notify the newborn's parent, guardian, or custodian and attending physician of the screening results.

(C) A hospital or freestanding birthing center shall not conduct a critical congenital heart defects screening if the newborn's parent objects on the grounds that the screening conflicts with the parent's religious tenets and practices.

(D)(1) The director of health shall adopt rules in accordance with Chapter 119. of the Revised Code establishing standards and procedures for the screening required by this section, including all of the following:

(a) Designating the person or persons responsible for causing the screening to be performed;

(b) Specifying screening equipment and methods;

(c) Identifying when the screening should be performed;

(d) Providing notice of the required screening to the newborn's parent, guardian, or custodian;

(e) Communicating screening results to the newborn's parent, guardian, or custodian and attending physician;

(f) Reporting screening results to the department of health;

(g) Referring newborns that receive abnormal screening results to providers of follow-up services.

(2) In adopting rules under division (D)(1)(b) of this section, the director shall specify screening equipment and methods that include the use of pulse oximetry or other screening equipment and methods that detect critical congenital heart defects at least as accurately as pulse oximetry. The screening equipment and methods specified shall be consistent with recommendations issued by nationally recognized organizations that advocate on behalf of medical professionals or individuals with cardiovascular conditions.