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Andrea Baer was already a mother of two children when her son Trenton was born, but nothing could have prepared her and her husband for Trenton's diagnosis when he was just 6 hours old. Trenton was born with a life-threatening congenital heart defect and needed medication to keep his heart functioning until he could have open heart surgery to repair his heart's atrioventricular canal (AVC) defect and patent ductus arteriosus (PDA). The surgery, performed when he was 11 weeks old, was successful; Andrea's experience affected her deeply and drove her to do more.
"After Trenton's heart was repaired, I felt the need to educate and advocate for others," as Andrea and her husband felt "this was lacking in our experience." She admits that at the time she didn't know much at all about the heart and didn't know that congenital heart defects (CHDs) are the most common birth defect recorded in the United States. In fact, about 40,000 babies are born with CHDs each year.* Andrea didn't want other parents to suffer the agony she did; she did not want them to feel alone - with nowhere to go for support.
Because of this desire to help other families, Ms. Baer went from being a full-time working mother to being a full-time advocate for her son and others with CHDs. Since that day in 2009, when she decided to start a local chapter of the national nonprofit organization Mended Little Hearts, Andrea went on to be elected vice president of the national group and currently chairs the steering committee.
Mended Little Hearts provides in-person, internet, and telephone support meetings for parents of children with CHDs and creates awareness by informing the general public about CHDs. In addition, the organization advocates on issues that help families with CHD locally and nationally. Ms. Baer has participated in collaborative efforts with the Adult Congenital Heart Association, the Pediatric Congenital Heart Association, and the Children's Heart Foundation to pass the Congenital Futures Act and secure federal funding for research and surveillance of those with CHDs across their lifespans.
Last year the Peer Reviewed Medical Research Program included CHD as a topic area eligible for research support for the first time in its history, and Andrea Baer was one of the first to serve as a consumer peer reviewer, bringing an important perspective to the application review process. Nominated to be a peer review participant by Mended Little Hearts, the organization for whom she works tirelessly, Ms. Baer felt that "having the ability to represent the CHD community and contribute to the process by identifying high-impact proposals was the most rewarding part." She also "enjoyed working with the panelists and felt that the patient voice was well represented during the process. As a parent of a CHD child, it was wonderful to have the ability to have that voice."
Aside from all of her volunteer efforts to raise awareness of CHD, Andrea is a wife and proud mother of four children. She recently became a grandmother, and she enjoys spending her days with her family. She has also begun pursuing a Master's degree in Nonprofit Management to help continue her mission of advocacy for CHD awareness.
*Statistics from the Centers for Disease Control and Prevention: http://www.cdc.gov/ncbddd/heartdefects/data.html.