What is Normal Child Development in Children with Complex Congenital Heart Defects?
February 4, 2014
Hosted by Anna Jaworski
With more children with complex, congenital heart defects, or CHDs, living beyond their first of year of life than ever before, parents and the professionals working with those children need to know what normal development is for this group of survivors. What kind of behaviors are normal or common? Is it to be expected that the majority of these children will be labeled “Failure to Thrive”? Is it common for children with major heart defects to need feeding tubes? How does the use of feeding tubes affect speech and language development? What can parents and the professionals working with them do to help these smallest survivors have a good quality of life? Who should be part of children’s care team? When should parents seek outside help? These questions and more are answered in today’s episode: What is Normal Child Development for Children with Complex Congenital Heart Defects?
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 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.