We Saved You a Seat

National Newborn Screening Awareness Month (Annie Evans & Susan Mays)

September is National Newborn Awareness Month: 

Passionate about helping families find good quality healthcare that transcends cultural and language barriers, Annie Evans works to creatively engage different stakeholders in Expecting Health’s programs through outreach efforts, development of practical tools, and monitoring of impact for quality improvement. She focuses mostly on our online engagement initiatives from both a technical and conceptual perspective. 

 

Annie currently manages the Newborn Screening Family Education Program which created Navigate Newborn Screening, the free, online educational module for families.  Annie received a Master of Public Health from George Washington University.

 

Susan Mays lives in Mukilteo Washington with her husband and two children. She is a passionate advocate for Newborn Screening after their life got flipped upside down when her oldest daughter was born with a rare metabolic disorder. After an uneventful pregnancy and delivery they couldn't wait to start their lives as a family of 3. Then 2 weeks later came the call which would change lives forever. 

Indie, Susan's daughter, had tested positive for a life threatening metabolic disorder which was thankfully caught during a routine public health program called Newborn Screening. Without this early detection and diagnosis, Indie's condition is lethal. Because of it, treatment and management was able to be started right away and Indie is having the opportunity to grow and develop typically. Susan believes every baby born in the U.S. deserves this same privilege and because of this she advocates for NBS in a variety of ways. One of which is volunteering with the Expecting Health team and is an ambassador for the Navigate Newborn Screening Program. 

 

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Helpful Links: 

 

• Baby's First Test
• Expecting Health
• Navigate Newborn Screening
• Oklahoma Family Network
• Expecting Health Contact: info@expectinghealth.org

 

Mental Health Support

DeAnn and her husband Scott Warfel live in Oklahoma City and are the parents of five daughters ages 25 to 12. Three of their daughters are adopted through DHS and two are biological. DeAnn graduated from Oklahoma City University School of Law and worked in the health care field for many years; however, God called her home to home educate her children when their health issues became significant. Through the years their family has dealt with many concerns such as epilepsy, autism, bipolar, addiction, anxiety, depression, suicide attempts, self-harm, disruptive mood dysregulation disorder, RAD, and many more. DeAnn realized how important it was to find a network of people who could help you through some of these issues and people who could remind you that you are not alone. She has taught classes through the National Alliance on Mental Illness and continues to support families as she can. She currently continues to homeschool the last of her five children.

 

Oklahoma Family Network: http://oklahomafamilynetwork.org/

 

National Alliance on Mental Illness: www.nami.org 

 

Valuable site for teaching how to deal with a child who is mentally ill. Helps with teaching communication skills and collaboration skills: www.livesinthebalance.org

 

CMV Awareness: Family Stories & Facts

Between 50 percent and 80 percent of adults in the United States have had a CMV (Cytomegalovirus) infection by age 40. Once CMV is in a person's body, it stays there for life. CMV is spread through close contact with body fluids. Most people with CMV don't get sick and don't know that they've been infected. (https://medlineplus.gov/)

CMV affects 1 in every 200 babies born. The symptoms range from completely asymptomatic to severe. It is the most common non-genetic cause of hearing loss at birth and unfortunately often contributes to progressive hearing loss. Many babies are born with no (or missed symptoms), but may later develop hearing loss or have other development issues. Pregnant women should take appropriate precautions to reduce their risk. 

June is CMV awareness month. Guests Ellie Pryor and Cara Gluck share their personal stories of giving birth to their children whom received a diagnosis of CMV and what they would like other families to know about this common virus.

ADDITIONAL RESOURCES:

www.oklahomafamilynetwork.org

https://www.nationalcmv.org/ 

https://www.facebook.com/oklahomafamilynetwork/

You Are Welcome Here

In the first episode of "We Saved You a Seat", Joni Bruce (Executive Director) and Heather Pike (Associate Director) chat about how Oklahoma Family Network was formed, their involvement and their hopes and dreams for families in Oklahoma.