Baby's First Test

Making Health Information Fun at the CHIP of NRV Hispanic Health Fair by Amy Sorensen

The Hispanic Health Fair sponsored by the Children’s Health Improvement Partnership (CHIP) of the New River Valley took place on June 29, 2013. CHIP of NRV’s Registered Nurse, Jane Hellman, was the driving force that helped make the Hispanic Health Fair a huge success. Jane has a long history of working in the Hispanic community to promote health and wellness. Jane and several volunteers were able to bring together several partners from the community to share information at the Fair.

The Salvation Army was on hand to share with families the services that they provide to the community.

The Virginia Cooperative Extension provided healthy snacks and nutrition education. 

A local Hispanic restaurant provided lunch with food preparation demonstration and popular Mexican drinks. 

There was a display set up to illustrate high sugar content in unhealthy drinks versus sugar content in healthy drinks. 

There was a local doula on hand to answer questions about childbirth and breastfeeding. 

The children enjoyed juggling and balloon animals. Children and adults learned from the hula-hoop instructor. The face painting and piñata were also a huge hit! Free bilingual books were given away in goody bags that were stuffed with tons of useful information.  Numerous bilingual flyers and pamphlets were available with educational information and resources available to families.     

  Baby's First Test and Children’s National Expands CCHD Parent Education

The Heart Smart video series developed by Children’s National Medical Center (Children’s National) is changing the educational landscape of critical congenital heart disease (CCHD). As a 2012 and 2013 Baby’s First Test Challenge Award recipient, Children’s National created the Heart Smart video series to educate healthcare providers, families, and advocates about screening for CCHD using pulse oximetry.  These videos have received positive responses within the newborn screening system on both domestic and international platforms.

With a strong mission to create innovative solutions to pediatric health challenges and improve health outcomes for children across different populations, Children’s National did not stop there. Children’s National knew that gaps in knowledge about CCHD screening existed among large populations of patients, families, and advocates for multiple reasons, but partially because of language barriers and issues of access to the videos. To close this gap, Children’s National translated the Heart Smart parent video into five languages: Arabic, Spanish, Russian, French, and simple Chinese. “We are happy to provide resources that may be utilized internationally to increase awareness and improve education surrounding CCHD screening,” said Elizabeth Bradshaw Mikula, MSN, RN, CPN, Clinical Program Manager for Cardiac Research. The original and translated versions of the Heart Smart parent video are available on YouTube and in CD format for those without access to video-streaming sites.

Wishing everyone a Happy Independence Day! Take the time today to enjoy food, family/friends, fireworks, and BABIES!

On July 1, Utah will start screening newborns for the often fatal severe combined immunodeficiency syndrome (SCID). Learn more about what is commonly known as "bubble boy syndrome" at Baby's First Test. http://bit.ly/PagNL1

by: Anisha Suterwala

It all began in 1962 when Dr. Robert Guthrie developed a simple blood test to detect the metabolic disorder phenylketonuria (PKU) in newborns. The effectiveness of the PKU test led to the institution of mandatory state newborn screening programs around the nation. This test, now known as the heel stick test, saves hundreds of thousands of newborns every year from severe developmental deficiencies or sudden death caused by otherwise unidentified, and often symptomless conditions. Today, newborn screening tests are available for nearly 60 disorders – from amino acid disorders like phenylketonuria to hemoglobin disorders like beta-thalassemia to even more unpronounceable fatty acid oxidation disorders like carnitine palmitoyltransferase I deficiency.

Detection of a wide range of serious but treatable health disorders and conditions happen thanks to three screens – a heel stick test, a hearing test, and a pulse ox test, which screens for heart defects. The newborn screening process is also fairly simple. With the first 24 to 48 hours of an infant’s life, a hospital technician pricks the heel and blots the emerging drops of blood with filter paper. Then, the blood spot is sent to a state laboratory for testing. If the results come back abnormal or outside of the normal range, parents are recommended to visit a healthcare professional or their healthcare specialist.

Although newborn screening programs are available in all 50 states and the 6 territories, requirements vary from state to state. Most states screen for at least 29 of the 31 recommended conditions established by the Recommended Uniform Screening Panel (RUSP), developed through the Secretary of Health and Human Services Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC), in 2006. But, all states do not screen for the same 29 conditions in a uniform manner. The lack of uniformity across U.S. newborn screening programs can leave many parents in the dark in the world of newborn screening.

Baby’s First Test is a newborn screening initiative designed to inform and empower parents, healthcare practitioners, and advocates through the newborn screening system. BabysFirstTest.org provides the most extensive information and resources about newborn screening at the local, state, and national levels to make parents, healthcare professionals, and medical practitioners alike have access to up-to-date and relevant information about newborn screening and newborn health. You can also connect with Baby’s First Test on Facebook, Twitter, Pinterest, YouTube, and Tumblr. We at Baby's First Test are so excited to be expanding our outreach and will also be adding more information, stories, and resources to our blog in July. Look out for our themed blog posts - Advocate Wednesday and Hot Topic Fridays - which will touch on advocacy efforts and current news in newborn screening within the coming weeks!

Newborn screening is one of the most important things you can do for your baby when they are born. It detects serious, but treatable, conditions in 1 in every 300 babies! Without these screenings, those babies would have low quality of life and many would have died. Many people don't understand how critically important newborn screening is or even what is screened for.

We want to know what questions YOU have! Please ask anything you would like to know and we will work hard to give you a sufficient answer and valid information!