CHD what?

The title of this BLOG took a bit of thought. By a bit I mean five whole minutes. Don't let that fool you, when this brain gets goin' it's hard to stop it. 'Hey, brain! Stop thinking so much. Take a rest for a bit. Like, watch a reality show or something.'

There needed to be a personal relation of the title with who I am, or why I am me. Not that I necessarily define myself by having a CHD, but it is more that I have been able to experience some really amazing miracles, difficult fears, painful surgeries and the blessings of a healthy body and learning to never take it for granted. Should it not be forgotten  - the importance of properly taking care of this physical body.

As this blog is really a memoir in non-book format, it is fitting to take a step way back to the date of my birth. My mom had not planned on having me early, and being that my dad was working in Georgia at the time, he heard my arrival over the telephone.

Per the hospital requirements of initiating a newborn baby into the world, all the necessary measurements, pokings, jabbings, slappings and proper bum spankings were carried out in the usual fashion. Healthy baby girl with incredible olive skin.

My parents were always healthy people, avoiding smoking, alcohol, latex gloves, wearing of fanny packs. Point being, they didn't do anything to warrant any birth defects of any sort, and had already had two children (my older siblings) that would go on to this date in time having no crazy health related diseases or conditions. They even had such great teeth that braces were reserved for the rest of us fangly-grin beasts.

When the General Practitioner came in to do the routine newborn check-up the sound of my heart registered a familiarity. Just a few months prior he had had a new baby diagnosed with a heart defect and the sound of our hearts were similar enough that he knew something was not right. In the first few days of birth, the valve in a newborns heart closes, so for further monitoring, my mom and I were kept an extra two days to make sure the valve closed. At five days old, my mom took me to Boise, Idaho to get further evaluation including a heart catheter.

The diagnosis came back Tetralogy of Fallot. A Congenital Heart Defect (congenital means disease or abnormality present at birth). I'm sure at that time my mom and dad were wondering 'what now?'

What happened after the diagnosis? Tune in tomorrow to find out...


Just some facts via The Children's Heart Foundation
Incidence, Morbidity & Mortality

• Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
• Congenital heart defects are the #1 cause of birth defect related deaths.
• Congenital heart defects are the leading cause of all infant deaths in the United States.
• Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.

Lifelong Disease

• Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
• There are an estimated 2,000,000 CHD survivors in the United States.
• For the first time, more than 50% of the CHD survivors are adults.
• 10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.

Economic Factors

• 91,000 life years are lost each year in this country due to congenital heart defects.
• The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

General CHD FACTS

• More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
• There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
• In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

TOF