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Child Life On Call: Parents of children with an illness or medical condition share their stories with a child life specialist

Aug 28, 2017

Episode 9 features an interview with Liz and Jamie. Shortly after Jamie was born, she developed a heart murmur and began passing out. Her mom, Liz, walks us through what it was like to witness such terrifying scenarios and how she began to become an advocate for her daughter. Despite being told that nothing was actually wrong with Jamie, Liz pushed harder and demanded tests that led them eventually to her diagnosis, Tetralogy of Fallot, a rare and serious heart defect. 

Years after the surgery to correct the defect, they'd come to learn that Jamie had been infected with HIV during a blood transfusion. Throughout this episode Liz talks about how she made some of her toughest parenting decisions: how to tell her child that she had the AIDS virus and how much information to give her. She talks about how she coped with not knowing how long her daughter would live for, experts had guessed it would be about two years. Unlike most childhood diseases and illness, there were no support groups for children with HIV and the stigma associated with it provoked fear in the public who didn't know much about the disease.

Liz provides incredible insight on how she dealt with news that could have easily darkened her world and every day life - She says to think about the worst case scenario and be thankful for the here and now and to choose hope.

Jamie shares her own experiences and memories surrounding how she kept her HIV a secret from her friends and classmates, and how her experiences at Hole in the Wall Gang Camp were a game changer for her and her confidence.

Liz and Jamie live with a glass-half-full mentality and talk about their most personal conversations, their hardest experiences and how they find joy in the small celebrations and challenges of life. 

Jamie is the Child Life Director at Inova Children's Hospital and pursued the career based on the fact that her own experiences led her to want to support other patients and families going through their own medical journeys. 

Liz's advice to other parents going through their own experiences would be to advocate for your child, you know your child the best and you are the first line of defense. 

Jamie tells children and adolescents to ask questions and tell people what you need, build your support team, and become an advocate for yourself.

Jamie credits her mom to being the reason she is alive today and says that without her, she wouldn't be loving life, living with her husband and talking about what she wants to do in her retirement. Liz tells us that Jamie chose hope. Medical science can leap frog over you, but choosing hope is what will get you through. 

I have excellent news for you, and that is if you wish you knew MORE about Jamie’s experience about growing up with HIV, she has written a book! It is called “Surviving HIV: Growing Up a Secret and Being Positive” and you can buy this book on Amazon.

Please follow along with Child Life On Call wherever you like to check your social media, Facebook, Instagram or Twitter, and if you have any questions you can always write to me at