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Pondering my Heart Defect

Apr 8

Posted by: ACHA
4/8/2013 11:44 AM  RssIcon

By Gwendolyn Russell

As I was driving home from my latest doctor’s visit, I began pondering why I have trouble accepting my heart disease. I was born with a heart defect—my mother was unaware of the severity of my illness and she often told me that I was born with a veil over my face—which symbolized that I was going to be someone special. Could it be that I was born blue—with visible signs of a heart defect? I was born at home with only the assistance of a midwife, and no another means of medical attention was accessible.

My mom always told me I was a “sickly child.” My poor health was never understood by my father. For my safety, Mom smothered me with love and kept him at bay. My siblings have told me and I remember that I cried a lot. I was underweight until I was 11 or 12 years old. My father was emotionally ill-equipped to handle my prognosis—once when I was gravely ill and my mom needed assistance negotiating the medical system, my father had resolved to let me die. My mom received help from a male stranger—and she shielded me and cared for my health until I stabilized at the age of 16 years old—until she became sick herself and I had the tools to care for myself.

There is an a interesting parallel, in that I learned to repress my illness early on and empowered myself to ignore symptoms related to illness in order to survive. As I recount my life, I was often sleepy, would nod off in classes, was reprimanded by teachers, and laughed at by peers when I would fall asleep and snore loudly. At an early age, I learned to compensate for my illness. I learned to verbalize my feelings and worked hard to not fall asleep in class. I remember that's when I learned to daydream. But is it really daydreaming when your heart is not getting enough oxygen and you are in a limited state of consciousness?

Compensating and coping by repressing the notion of illness is how I managed through life. My undergraduate college years were treacherous; as I look back, I was very sick and academics were difficult. I muddled through and persevered. I was raised during the Civil Rights Era, and the tools learned in my youth to combat racism helped me to progress in life despite my heart condition. I used these same tools throughout my life to reach the goal of an expert in my field of social work. I have learned early on to care for others as I would care for myself and I became very good at this skill.

Gwendolyn Russell works full-time as a social worker. She was diagnosed with atrial septal defect (ASD) as an adult in 2008, having lived her entire life struggling with undiagnosed ASD and atrial fibrillation/flutter. Gwen has had open heart surgery to repair her ASD. Most recently, Gwen has been diagnosed with sick sinus syndrome and now proudly wears an implanted pacemaker, which she coins "Pacie."

Copyright ©2013 ACHA

Location: Blogs Parent Separator ACHA Blog

5 comment(s) so far...


Re: Pondering my Heart Defect

My two children had what you have and my youngest will be getting his pacemaker in this month. Your story is inspirational I made it through my sons issues some how but this year I was dianosised with Left Ventrical Non compaction Cardiomyopathy and now I am having to deal with life as it is unfoutunantly I am unable to deal with my situation as well. I have asked for help am I am intending on quiting work as being 44 and wore out all time is there hope for those that has had to deal with these losses.

By Billie Keaffaber on   4/8/2013 2:22 PM

Re: Pondering my Heart Defect

Hi Billie - I'm Ruth, I'm the Education and Outreach Manager here at ACHA. We are so sorry to hear you are struggling. While things are certainly tough sometimes, we believe there IS hope for every person with congenital heart disease. Please feel free to contact me ( or Paula Miller, ACHA Member Services Manager, at or by calling 215-849-1260.

By Ruth Phillippi on   4/11/2013 10:57 AM

Re: Pondering my Heart Defect

How interesting to learn of someone else being born with a veil over their face like me.My Mom always told me I could see into the future.I had a female doctor deliver me in 1958 and I was named after her.I was born with one leg longer than the other and had to learn to walk with braces on my legs.I always over excelled in school and was very athletic.Now at 54 I find out I have severe aortic stenosis.I was born with 2 leaflets instead of 3.I am having a valve replacement 2 weeks from today and am scared to death.I am loaded up on antidepressants.Any insight would be appreciated.

By Rebecca Henry on   4/16/2013 9:44 AM

Re: Pondering my Heart Defect

Hi Rebecca
You are not alone. You can find support, resources and information through the ACHA discussion forum or the Heart to Heart Ambassador program. I would love to help you. Please contact me at h2h@achaheart .org or
Paula Miller
Member Services Manager

By Paula Miller on   4/16/2013 10:49 AM

Re: Pondering my Heart Defect

I so relate to repressing the notion of having an illness. I think it was the way our parents coped with life in general when I was growing up (I am 67 now). I know my open-heart surgery was NEVER mentioned by anyone. In fact, I never talked much about my heart defects, except a little to therapists, until joining ACHA. Like you I just coped and compensated...well put. Thank you for writing. Toni

By Toni Smith on   4/25/2013 7:41 AM

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