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 →
A few weeks ago I saw a post by a mom of an autistic child in my blog feed. She was livid about this news out of NYC – about… Read more Greater Than One Percent →
The Context of Crisis Years ago (wow I’ve been writing for a long time) I wrote this blog post that was very popular about what to say/not say do/not do… Read more Respect the Experts: Part Five →
A Trauma Mama is Not A Drama Mama I hope now with the first three parts (One, Two, and Three) of the Respect the Expert Series, that all readers understand… Read more Respect the Experts: Part Four →
Never Better In Part One I covered the serious nature critical congenital heart defects (CCHD) and in Part Two, I addressed the complexity of these birth defects. Congenital Heart Defects… Read more Respect the Experts: Part Three →
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 →
Edited – 12/7/13 – If you’re going to invest the time to read this blog post, please also make time to read this one or read this one first because it’s more recent. In an effort to curb traffic for such an old post, I’m moving the original letter to the “What We Talk About” post. If you really want to read it, it’s an appendix to the good/new stuff.
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% →