What is Normal Child Development in Children with Complex Congenital Heart Defects? With 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 âFailure to Thriveâ? 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 childrenâs care team? When should parents seek outside help? These questions and more are answered in todayâs episode: What is Normal Child Development for Children with Complex Congenital Heart Defects?
Guest Bio: Eileen Pearlman has two daughters, Jessica and Amy Cowin. While pregnant with Jessica, she thought everything was fine. Jessica was born on June 7, 1983. Doctors began monitoring her heart due to an irregular heartbeat. Three days later, after extensive testing, she had emergency surgery because she had hypoplastic left heart syndrome. But nine years before Jessica was born, Eileen was already a practicing Speech/Language Pathologist. She began her career as a Speech/Language Pathologist in 1974 and she works primarily with students who have special or multiple needs. Â Vicki Lucas is a Special Education Teacher and mom to teenage sons:Â 14-year old Ian, 16-year old Alex, and 18-year old Zach. Vicki and Steve have been married 20 years, weathering the challenges and thrills of raising three sons, including a child with a complex congenital heart defect. Over 15 years of classroom experience and private tutoring have given Vicki insight into the challenges and learning styles of special needs students. Alex was born with hypoplastic left heart syndrome (HLHS). He has had 4 open-heart surgeries and multiple catheterizations. Alexander has seen the gamut of learning environments from specialized preschool, Language Learning Development, Self-Contained, Resource Room, In-Class Support; culminating in a 504 Status. For a child expected to use a Picture Exchange Communication System or PECS Communication System, Alex has since progressed to Honors and Talented and Gifted classes. Alex is planning to attend college!
Dr. Dawn Ilardi is a senior pediatric neuropsychologist at Children’s Healthcare of Atlanta and Sibley Heart Center.Â She specializes in working with children who have complex CHDs requiring cardiac surgery or transplantation. Her focus is the assessment of children’s abilities, including cognitive, emotional, and social functioning thus helping families and schools understand each childâs strengths and weaknesses. She makes recommendations to support children’s needs. She also works with children before discharge from the hospital addressing familyâs concerns and facilitating the transition back to school. Dr. Ilardi and other professionals from leading childrenâs hospitals are building developmental follow-up programs for children with CHDs to make sure they get the necessary assessment and intervention support needed from infancy to young adulthood. Dr. Ilardi collaborates with others to collect research to better understand the needs of children and young adults with CHDs. 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. Heart to Heart with Anna will be broadcast live every Tuesday at 12 Noon Pacific Time on the VoiceAmerica Health and Wellness Channel.