Angels and Warriors

If you or your child is awaiting surgery, had surgery(s), an adult living with CHD, or have your CHD angel guarding from above, after all you’ve been through, we’d love to hear your stories in our Stories Told from the Heart: Angels and Warriors page.  Even if you don’t have a CHD, but know someone with one and you’d like to share, please feel free to join in.  Include pictures and/or videos if you’d like, or tell your story and remain anonymous.  Send your submissions to admin@helpingheartscharity.org or fill out the form in Contact Us.  Thank you!

— “Among the five children my parents had, I was the chosen one, born with TAPVR in 1957.  Thank God none of my brothers or sister had any CHD issues at all.  As the days and weeks progressed after birth, my parents told me I cried constantly, could not keep food down, consequently didn’t gain weight, and began to take on a bluish tint in my fingers and toes.  Mom & Dad went from doctor to doctor to doctor until they were finally told their baby had a heart issue that was responsible for the condition.  At four months old, they were told to get me to Texas Children’s Hospital in Houston ASAP, a Dr Denton Cooley would take the case.  Near death, I spent the next two weeks in the hospital being stabilized in preparation for open heart surgery to repair the defect.  With the idea of heart surgery being a relatively new idea at the time, survival wasn’t a given.  My Mom said her and Dad had to acknowledge that it was experimental surgery, and as Mom said, it was their only hope.  In a race against time and rapidly declining health, the procedure was performed by Dr Cooley and his team January 30, 1958.  I was 4 1/2 months old.  Miraculously the surgery was a success.  Eight months prior to my surgery, Dr Cooley had performed the same procedure on a little baby, Michael, from Louisiana.  Mike was his first successful case to repair TAPVR, making me the second.  Throughout my recovery, my parents became friends with Mike’s parents, a friendship that lasted many many years.  We lived about an hour apart.  Mike is a good friend of mine to this day, and we are obviously interested in each other’s health, to say the very least.

Life for me as a little boy, teenager, and then well into adulthood included sports upon sports.  I fell in love with baseball and golf at about 9 years old (they’ve stuck with me for life), and was attracted to pretty much anything involving a ball throughout my teen years and into my 20s, 30s and even 40s.  All this sounds great, but believe me, Mom & Dad had a constant awareness of how my start in life went.  They supported my love of sports, but as any parent would, they always kept one eye open.  One of the less physically strenuous sports that grabbed me very early in life was pool, billiards.  I started shooting on the family table when I was old enough to see over the rail, and to this day, it’s my life’s passion, it’s what I do best. Tournaments at local, state and national levels fills my time when I’m not playing financial advisor, hubby, Dad to my own three heart-healthy children, and Pop to four grandkids.  I kid with people when I tell them my love for pool is why I have a day job.  hahaha

For literally 40 years, I was fortunate to have had no association with any cardiologist at all.  Life, as they say, went on.  Funny things happen to you when you turn 50 though.  Some of my “funny things” included my brothers and my Mom (Dad passed away when I was 20) telling me I should start getting my heart checked, you know, that whole ‘you had heart surgery’ thing.  In short, I finally did.  Through several years of having what I called little blip-blips in my heartbeat, little nothings, and having surpassed 50, I finally caved and set up an appointment with a cardiologist.  We met off and on for three years, and then in 2012, when I was 54, it started.  Bonafide atrial fibrillation.  Result, pacemaker in April 2012, followed by cardioversions in December 2012 then again in September 2013.  Since then, no afib worthy of a cardioversion, but as time marches on, we the patients, as well as the cardiologists, are learning how us older TAPVR survivors get along later in life.  It’s been quite an adventure.“  — Carl Wolford

— “I don’t have children with TOF (Tetralogy of Fallot), but I myself have TOF.  I see a lot of support from parents to other parents, so I don’t know what it’s like to be on your side, but I can tell you what it’s like to be on mine. Since birth, I have always gained my strength from my parents, my mother in particular. Going through procedures and surgeries, days and weeks in the hospital, take so much out of us. But the strength you give us, is what keeps us fighting. I hated going to the Dr so much. I hated the parking garages. The smells. I always got so worked up I would get sick. But I always looked at my mom to see how calm she was, because I fed off that. If she wasn’t upset, why should I be? So I case your HW (Heart Warrior) hasn’t told you how they feel, just know that you are the reason we fight. Your strength keeps us going. Your energy is what we thrive on. So thank you for fighting. Thank you for never giving up”  — Neile Johnson