The price of being wrong: newborn screening saves babies, "but lives can be shattered when state labs ignore science and common sense"

In  2013 the Milwaukee Journal Sentinel published an amazing piece of investigative journalism on delays in newborn screening across Wisconsin and the US. My son was just a baby at that time, and the story and its ramifications and aftermath caused me many nights of worry and sadness for families affected by conditions that may have been treatable if caught in time, but for whatever reason or another were not. 

The journalists on this project have continued returning to this issue over the last three years. Just last week more articles on continued delays across the nation were published, despite President Obama and his administration earmarking millions of dollars for H.R.1281 - Newborn Screening Saves Lives Reauthorization Act of 2014. Our labs, hospitals, and doctors still have a long way to go, despite technology and small fixes that could help tremendously. 

What does a Wisconsin newborn screening cover? Here is a timeline from WI State Lab of Hygiene.

How does your hospital or health system compare? I was unable to find an updated document listing performance in 2016, however you can see how they did in 2013 and 2014.  WI hospitals did make some progress.


2016

• Deadly delays: states fail to meet newborn screening goals
• The price of being wrong:Newborn screening saves babies, but lives can be shattered when state labs ignore science and common sense 
• Editorial: Fix problems with newborn testing 

2015

• State lab to track speed of newborn screening
• Some states still won't disclose newborn testing data

2014

• Obama signs national newborn legislation
• U.S. House unanimously approves newborn screening bill
• U.S. Senate OKs newborn screening measure
• Privacy issues stall newborn screening bill in U.S. Senate
• Days after newborn screening reform, a baby's life is saved
• Newborn screening fixed gain traction in some states, roadblocks in others
• more from Ellen Gabler

2013

• Wisconsin hospitals sent newborn blood samples late; state fought to keep their performance hidden

MIKE DE SISTI / MILWAUKEE JOURNAL SENTINEL

WHSLA Spotlight - Robert Koehler at UnityPoint Health-Meriter in Madison, WI

You might know me as WHSLA’s “appointed for life” Treasurer.  However, I do have a day job.  For the past thirty-two years I’ve been a librarian at Meriter Hospital (now known as UnityPoint Health-Meriter).  During this time I have survived several hospital mergers, my library has been relocated a number of times, and my staff has been downsized.  As we all know working in the health care sector, there is rarely a dull moment.  I became Chief Librarian at Meriter in 1991 and then found myself the head of a one-person library in 2010.  Fortunately, I have had the help of many a university work-study student, as well as backup support from the Medical Staff Services Division, the unit I’m part of in the hospital.

My main responsibilities center on the library, but I’m also involved in several activities that expand my horizons.  I participate in coordinating the delivery of patient education throughout the organization.  I teach reflective journaling classes four times a year to newly employed nurses and am an active member of the Nursing Research Council.  We also have a Narrative Medicine Committee at the hospital, which I chair.  Twice a year this committee sponsors a “Meriter Reads” event.  We choose a popular book with a health care theme and encourage the entire organization to join us in reading it.  An informal session is then held to review and discuss it.  Occasionally, we have brought in authors as well to talk about a pertinent book they have written.

I grew up in northwestern Wisconsin in Bloomer, “the Rope Jumping Capital of the World.”  Before getting my degree at UW-Madison, I spent some time roaming the world: hitchhiking around the U.S. for several years, as well as living in England.  I graduated with my MLIS in 1980.  I’ve been happily married for 30 years to a former librarian some of you may know or remember, Jackie Pratt.  She worked for a good many years at the UW Health Sciences Library.  My hobbies include running, biking, gardening, and writing.  I have a blog, Robert Up At Dawn, where I post my poetry and reviews of books.

Robert at Olbrich Botanial Gardens

"Stranger Things" and the neuroscience of imagination

"Stranger Things", a series on Netflix, is a tribute to the 1980's, things that go bump in the night, and preteens solving a mystery the grownups can't figure out. If you've ever seen it, you know the writers must have used their imaginations (and then some) to come up with the story, characters, and setting. 

This got me to thinking about how our imagination actually works. How can we "see" things in our mind, that we've never seen in reality? This 5-minute TED-Ed lessons gives us a good start into understanding the neuroscience of human imagination. 

Heart attacks are more common between Christmas and New Year's - True or False?

As we continue to get in the holiday spirit, we are wondering about important questions like this one: are poinsettias really toxic? Here's the truth about holiday "facts" including does sugar make kids hyper? 
http://www.nextavenue.org/8-holiday-health-myths

Latest WHSLA Wisdom Chat - Gail Murray (DPI) on Badgerlink's health resources

On Wednesday, December 14, Gail Murray, Content Management & Outreach Librarian  from Wisconsin Public Instruction presented on the WHSLA Wisdom Chat about BadgerLink.  We learned a few things about the array of resources available from BadgerLink!  You can view this presentation here. WHSLA WISDOM CHAT-Featuring Gail Murray, from DPI, providing an overview of BadgerLink (CorrectedDate)-20161214 1558-1

Gail prepared a survey for health science librarians about BadgerLink and she would really appreciate if we took the time to complete it.  They are eager to hear from us!  bit.ly/badgerlinkhslsurvey

Thanks,

Barbara E. Ruggeri, MLIS, Clinical Services Librarian

Children’s Hospital of Wisconsin Medical Library

MCW Libraries |bruggeri@mcw.edu|414-266-2340

http://www.mcw.edu/Libraries.htm

Looking for that perfect gift for a health care professional in your life? Have we got a list for you!

I'll admit it. Buzzfeed is one of my secret guilty pleasures, along with Victorian crime mysteries, Flaming Hot Cheetos, and twinkle lights. Anyway, as I was checking Facebook today, the perfect Buzzfeed article came across my desk.

If you've ever secretly wanted an EKG necklace, green plush spleen, brain ring, kidney cutting board (a little too Jack the Ripper for me), or organ transport lunch cooler look no further. We've got you covered. 

• 27 Gifts For The Medical Nerd In Your Life
• 31 Delightfully Weird Gifts For All The Medical Nerds In Your Life

Timely and topical NNLM training opportunities coming up

In case you haven't visited the NNLM training calendar in a while, there are a host of really interesting opportunities coming up in December and another PubMed series starting next January. 

• Using ALTBIB: What, Why and How - 12/8/16
• From A(norexia) to Z(its): Providing Health Information to Teens: Program on Substance Abuse for Teens - 12/12/16
• Librarian as Researcher - 12/14/16
• Infographics: Communicating Information Visually - 12/20/16
• Data Science 101: An Introduction for Librarians - 1/18/17

https://nnlm.gov/professional-development

This temporary tattoo helps women have healthy pregnancies

Today's blog post features more from TED MED. Enjoy!

"What if doctors could monitor patients at home with the same degree of accuracy they'd get during a stay at the hospital? Bioelectronics innovator Todd Coleman shares his quest to develop wearable, flexible electronic health monitoring patches that promise to revolutionize healthcare and make medicine less invasive."