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Tag: hypoplastic

Eleven

I wrote this on Facebook tonight. What a blessing it is to forget. Eleven years ago right now, I was drifting off on my very first overnight in a hospital, 22 hours later I would have a living child. 34 hours later we would chose for him: life or death with no guarantees of the former and plenty of opportunity for the latter. Eleven years ago, at this moment, on a Sunday night, I fell asleep on the precipice of the most precarious fall and meteoric bounce a mother could… Read more Eleven

Half-heart, Whole Body: Part Two, B-R-A-I-N-S

Recently, at the behest of our cardiologist, we met with a neuropsychologist who administered a great many tests and even called our son’s teacher for an interview. There was no recent trigger for this visit, other than my intense interest in the “Whole Body” health care approach to CHD and our recent trip to the Single Ventricle Survivorship clinic at Children’s Hospital of Philadelphia. The field of neuroscience is advancing rapidly, and the leading pediatric cardiologists are realizing that you can’t put a body on life-support multiple times during a… Read more Half-heart, Whole Body: Part Two, B-R-A-I-N-S

Respect the Experts: Part One

When I started to write this post it became really long. I decided to break it up into parts so I could cover the ground without wearing out the reader. This first part is about the seriousness of critical congenital heart disease (CCHD).  To put it bluntly, I now know hundreds of parents whose children have died from CCHD, and yet the general public (including friends and extended family of those facing CCHD) doesn’t seem to understand what it cannot see.  Subsequent posts will cover complexity, prognosis, and the social… Read more Respect the Experts: Part One

We Are the OTHER 1%

One out of 100 every babies is born with a heart defect.  My son is the other 1%.  I am the other 1% of mothers.  I am the Wyvern who faces mountains of medical bills and an ceaseless barrage of fear.  I am a heart mom in the Heartland, and I am not alone.  We are the other 1% of America – not the ones with the millions and billions of dollars and $100,000 Birkin Bags.  We are the 1% with million dollar babies, and the chest tubes, and the… Read more We Are the OTHER 1%