Living with Eisenmenger’s Syndrome
Carolyn Robinson was born in April of 1948. Because of her blueness and what the doctors heard, they knew that Carolyn had a heart “condition,” however her heart defect wasn’t diagnosed until she was 10 years old. The heart-lung machine was developed and first used on a human in 1953. Carolyn’s first and only catheterization was at 10 years of age. Her diagnosis was a VSD and Eisenmenger’s syndrome. Carolyn’s parents were told that surgery was impossible. Her body had actually made some changes that helped her, and any surgery would have ended Carolyn’s life. As a child she had difficulty keeping up with other children. She was fortunate in that she didn’t miss much. Carolyn couldn’t participate in sports, but she wasn’t a sports-minded kid. A few years ago, after an MRI, Carolyn was diagnosed with truncus arteriosus. Currently Carolyn is 66 years of age, and although it’s still difficult for her to keep up, she does her best.
Links Mentioned in our Show:
Ontario Association of Children’s Aid Societies
Baby Hearts Press — this is where you can buy the book that includes Carolyn’s essay (The Heart of a Mother)
Other Helpful Links:
Mayo Clinic: Ventricular Septal Defect: Basics – Coping and Support
Wikipedia: Eisenmenger’s Syndrome
http://www.congenitalheartdefects.com/typesofCHD.html — Congenital Heart Defects.com
“Eisenmenger’s Syndrome: A Unique Form of Pulmonary Hypertension” by Simkova Iveta in Bratisl Lek Listy, 2009; 110 (12) p. 757-764.
MedLine Plus: Eisenmenger Syndrome