Congenital Heart Defect Advocacy

February 11, 2014
Hosted by Anna Jaworski

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Guest Information

Episode Description

Congenital Heart Defect (or CHD) Awareness is an extremely important issue. Congenital heart defects (heart defects present at birth) are the #1 Birth Defect. While a commonly reported statistic is 1 in 100 babies are born with a heart defect, that statistic does NOT include the most common CHD – bicuspid aortic valve. In fact, that statistic does NOT include a number of CHDs. That means that more than 1 baby in 100 is born with a CHD. Congenital heart defects also kill more babies than any other birth defect. In the United States there are 40,000 babies born every year with a CHD. There will be one million babies born worldwide with a CHD and 100,000 of them will not live to see their 1st birthday. While these numbers are staggering, there are still many people who are unaware of the fact that babies can be born with CHDs. We must raise awareness to stress the importance of funding research to prevent future generations of children from dying and suffering from this birth defect

Heart to Heart with Anna

Archives Available on VoiceAmerica Health and Wellness Channel

Heart to Heart with Anna is a program specifically for the congenital heart defect or CHD community. Our show will address issues of concern to the CHD community. Topics revolve around some of the special needs of the child born with a CHD, how to become an advocate for the CHD child, parent and CHD survivor and what it means to be part of the CHD community. The show addresses issues of concern to the CHD community. Members of the CHD community will serve as Guests to share stories to encourage others. While the topics will be especially pertinent to the CHD community, they also have a broader appeal to any community dealing with chronic illness since many of our topics are faced by other communities dealing with chronic illnesses.

Anna Jaworski

Anna Jaworski is the mother of a son with a severe congenital heart defect (CHD). Alex endured two open-heart surgeries in his first year of life. His surgeon told parents Anna and Frank that Alex was born with hypoplastic left heart syndrome a.k.a. HLHS. Alex underwent a revision of his last surgery at age 17 and had a Maze Procedure to stave off future arrhythmias.

With a lack of information for parents, Anna decided to write a book about HLHS and start a publishing company for the CHD community. She also helped start a support group for CHD parents in Central Texas and became a public speaker. Joey, Anna’s heart-healthy son, inspired her to write a second book, My Brother Needs an Operation. After a while, Anna started sharing stories with other CHD parents to educate and inspire them. Encouraged by these parents, Anna then became the editor of two books, The Heart of a Mother and The Heart of a Father. The books provide hope, encouragement, and support to the CHD community.

Anna has been a public speaker for many CHD events. She is a Distinguished Toastmaster, earning the highest level of communication and leadership awards Toastmasters offers. Anna has given speeches all over North America.

With a B.A. in speech pathology and MEd in curriculum and instruction, Anna helped Alex after he suffered a stroke and vocal cord paralysis following his second surgery. She also homeschooled her two sons. Anna still loves to teach and share stories with others.

Episode Directory

March 2014

February 2014

  • 2/25/2014: Special Encore Presentation: Genetics in Congenital Heart Defect Community Listen Now
  • 2/18/2014: Learning Disabilities and Possible Brain Injury in Children with Congenital Heart Defects Listen Now
  • 2/11/2014: Congenital Heart Defect Advocacy Listen Now
  • 2/4/2014: What is Normal Child Development in Children with Complex Congenital Heart Defects? Listen Now

January 2014

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