Season 1: You are Not Alone


You are NOT Alone!

Episode #1: You are Not Alone, 11/12/2013, Anna Jaworski (Host) and Guests: Grandparents Jesse and Nancy McCain, Heart Mom Callie Rickard and CHD Survivor Carl Wolford discuss the feelings of isolation that can occur when thrown into the world of congenital heart defects and how they now can appreciate that they are not alone.  

Episode #2: Post-Traumatic Stress Disorder, Anxiety and Survivor’s Guilt in the CHD Community, 11/19/2013, Anna Jaworski (Host) and Guests: Heart Dad Bryce Bagwill and CHD Survivors Lauren Bednarz and Yasmin Southwood  discuss how being born with a CHD or being the parent of a child with a CHD can lead to one of the conditions listed above. The Guests also discuss helpful ways of dealing with these conditions.

Episode #3: Organ Donation and Transplantation, 11/26/2013, Anna Jaworski (Host) and Guests:  Heart Mom Eileen Pearlman, CHD Survivor Jessica Cowin, Heart Moms Kathy Keller and Emily Wiebke, and CHD Survivor Anthony Pugliese discuss their experiences regarding waiting for and/or receiving a heart.

Episode #4: Siblings in the Congenital Heart Defect Community, 12/3/2013, Anna Jaworski (Host) and Guests: CHD Siblings Laura Ryan and Joey Jaworski and Don Meyer (Sibling Support Project) discuss what it’s like being the sibling of a child with a heart defect and what services are available for healthy siblings.

Episode #5: The Genetics of Congenital Heart Defects, 12/10/2013, Anna Jaworski (Host) and Guests: Heart Mom Jennifer Reed, Dr. Angela Scheuerle (Tesserae Genetics), CHD Survivor Ben Weisbuch (Heart Hope Foundation), and Dr. Woody Benson (Children’s Hospital of Wisconsin) discuss what new genetic tests are available to assist with the diagnosis of CHDs and other problems, who should have genetic testing and how genetic testing can save lives.

Episode #6: Cora’s Law and Why It’s Important, 12/17/2013, Anna Jaworski (Host) and Guests:  Heart Moms Kristine McCormick, Kim Willis, Annamarie Saarinen and Indiana Senator Brent Waltz discuss pulse oximetry testing and how testing newborns can save lives.

Episode #7: Snowflakes: How Each Heart is Unique, 12/24/2013, Anna Jaworski (Host) and Guests: Heart Mom Kristi Pena (Crusade4Christopher), Dr. Gerald Marx (Boston Children’s Hospital), and Cynthia Weston, RN (UTHSC, San Antonio) talk about how each heart is unique, what current tests are done to identify heart defects and how to help our children born with CHDs to survive and thrive.

Episode #8: Losing a Child to a Congenital Heart Defect, 12/31/2013, Anna Jaworski (Host) and Guests:  Angela Roberts (I Have Rights, Too), and Heart Moms Sheri Turner and Dara Glagola discuss how parents can survive losing a child to a congenital heart defect whether the child is stillborn, doesn’t survive surgery or even lives to adulthood and then dies. The show also focuses on how each of these mothers have turned their grief into a vehicle to help others.

Episode #9: Surviving the Teenage Years with a Congenital Heart Defect, 1/7/2014, Anna Jaworski (Host) and Guests:  CHD Survivors Monica Mossey, Tara McFadden and Jeni Busta discuss what it was like going through the teenage years with a critical congenital heart defect, some of the situations they faced (like bullying and having learning disabilities) and how they have thrived.

Episode #10: Sports and Extra-Curricular Activities for Congenital Heart Defect Survivors, 1/14/2014, Anna Jaworski (Host) and Guests:  CHD Survivors Mark Cummings, Victoria Scoggins and Alex Jaworski discuss what it was like growing up with a critical congenital heart defect and what sports and extra-curricular activities they enjoyed in their teenage years.

Episode #11: How Parents’ Relationships are Affected by Having a Child with a Congenital Heart Defect, 1/21/2014, Anna Jaworski (Host) and Guests: Heart Parents Brenda Vignaroli, Leah Lowrey and Frank Jaworski discuss how having a child with a congenital heart defect affected the relationship they had with their spouse, whether or not they are still married to the same spouse, and advice from what they learned over time.

Episode #12:  Non-Cardiac Health Issues for Survivors with Complex Congenital Heart Defects, 1/28/2014, Anna Jaworski (Host) and Guests: CHD Survivor Lauren Bednarz, Heart Dad David Simpson, Ph.D. and Dr. Amy Roberts (Boston Children’s Hospital) discuss conditions like congenital scoliosis, eye problems, protein-losing enteropathy, as well as, when parents or survivors should seek help and who can provide help to them.

Episode #13: What is Normal Child Development in Children with Complex Congenital Heart Defects? 2/4/2014, Anna Jaworski (Host) and Guests: Speech Pathologist and Heart Mom Eileen Pearlman, Special Education Teacher and Heart Mom Vicki Lucas and Pediatric Neuropsychologist Dr. Dawn Ilardi (Children’s Healthcare of Atlanta and Sibley Heart Center) discuss what “normal” means in the world of complex congenital heart defects, common developmental problems children with complex congenital heart defects experience and who can help.

Episode #14: Congenital Heart Defect Advocacy, 2/11/2014, Anna Jaworski (Host) and Guests: Heart Mom and National Program Coordinator for Mended Little Hearts Jodi Lemacks, Heart Mom and President/CEO of the Pediatric Congenital Heart Association Amy Basken and CHD Survivor Jon Ritchings, Jr. discuss how anybody can be an advocate for the congenital heart defect community, activities where they have been advocates and when advocacy is necessary.

Episode #15: Learning Disabilities and Possible Brain Injury in Children with Complex Congenital Heart Defects, 2/18/2014, Anna Jaworski (Host) and Guests: Pediatric Cardiologist Dr. Jane Newburger and Pediatric Neurologist Dr. Caitlin Rollins (Boston Children’s Hospital), Heart Mom Stephanie Gannaway and Special Education Advocate Lisa O’Connor discussed brain injuries and learning disabilities that can occur in children with complex congenital heart defects, what therapies are available as well as programs available in the schools for school-age children and tests and specialists available to help our children.

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