I am a die-hard baby and child advocate. Just a few short years ago, I wasn't this way. I was quite content living in my little bubble of oblivion. I honestly thought that not many babies were sick and that we did enough to keep those numbers low. I didn't think that sick babies affected me, so I just didn't put much thought into the details. And then of course, my sister gave birth to 2 severely premature little boys.
Her oldest will be three next week. Those three years have been a roller coaster of enlightenment, heartache and so much else. I've learned more than I ever thought to know about sick babies, often unpronounceable medical conditions and I have spent more time in Neonatal and Pediatric Intensive Care Units than I can even count.
But, it's been worth it. Aside from having two amazing little nephews to love and spoil, something else has come out of the entire experience. I no longer live in that cushy little bubble. And while leaving that bubble has by no means been easy; it's made a huge impact on my life. I pay attention and I speak up. Constantly. Which is why I am blogging today.
Earlier this month the March of Dimes released the 2007 Newborn Screening Report Card. This report card came after a 4 year advocacy effort, on behalf of the March of Dimes and many others, to instate and mandate newborn screenings for 29 treatable but all too often overlooked conditions (MoD, 2007). Screening for these conditions can often mean the difference between life and death.
Four years ago, only 38% of babies born in the United States were screened for those conditions at birth (MoD, 2007). Now, nearly 90% of newborns are screened. Forty-one states now routinely test for at least 21 of the 29 conditions, with fourteen states (Alaska, Colorado, Delaware, DC, Iowa, Kentucky, Maryland, Minnesota, Mississippi, New Mexico, New York, Rhode Island, Virginia, and Wyoming) routinely testing for all 29 conditions.
Ten states, however, failed to make the grade. Massachusetts, New Hampshire, and Washington only test for 12 of the 29; Nebraska and Oklahoma test for 10 of the 29; Pennsylvania tests for 9 of 29; Arkansas, Kansas and West Virginia screen for 7; and Montana screens for 6. Three of those states, Kansas, Montana and Washington have introduced legislation that will require testing on all 29 core conditions. The other 7 states have not.
There is currently no national mandate requiring testing for those 29 conditions; leaving those 7 states free to test or not as they will. And not testing in at least those 7 states, seems to be the norm. While the other states make the grade, 27 of those states don't test for all 29 conditions; bringing the grand total of states not doing all they can to 37.
Well over half of the nation does not require screening for all 29 conditions, leaving nearly 500,000 infants, this year alone, at unnecessary risk (MoD, 2007). With other issues, such as prematurity and birth defects, on the rise, that's a risk we really cannot afford.
Two pieces of legislation have been introduced in Congress which would "lay the groundwork for national guidelines and authorize funding for several new federal initiatives designed to increase educational resources for parents and health care providers, improve follow-up care for infants, provide assistance to states expanding and improving their newborn screening programs and develop new screening tools for additional life-threatening disorders" (MoD, 2007).
Unfortunately, the legislation is going nowhere fast. The Newborn Screening Saves Lives Act has been introduced numerous times since 2002, yet still remains in limbo today. The Screening For Health of Infants and Newborns (SHINE) Act of 2007 has a very similar back story; having been introduced in previous years only to never progress.
Which brings us, at last, to my purpose here. I want to encourage everyone to check out the legislation (links provided above) and to contact your Representatives and Senators and request that they add their names as cosponsors (if they haven't already) to the legislation. No child should have to suffer when a simply screening at birth could end that, but until we all take notice and make an effort, they will continue to do so.
More Information:
http://www.acmg.net/resources/policies/ACT/condition-analyte-links.htm
http://www.acmg.net/resources/policies/NBS/NBS-sections.htm
Wow. For once my state is on the list for doing something right instead of wrong.
I'm also struck by the fact that this is reverse eugenics! I'm telling you, eugenics is everywhere when you look for it...
/jkh