We will likely have more time.
That’s all I’ve ever asked for.
I also got a few emails about how we could have gone from a “real possibility” that she won’t make it, to a “95% survival rate” for her broken little heart. What could have changed that much?
Well, that’s a hard one to answer without insulting someone. I do have to say though, that since this blog is now frequented by people who Google the words ‘single ventricle’, ‘transposition of the great arteries’ and ‘congenital heart defect’, I would be doing those people, people who were searching for answers like I was, a disservice not to say what changed in our world. If there is another parent out there going through what I did, I want to help. Because, honestly, I shouldn’t have had to go through that, and neither should you.
First off, you need to watch this video. It’s all about congenital heart disease and why it is one of the hardest illnesses for a parent to navigate.
At about minute 1:47, the narrator says…
“The options for surgical repair are frighteningly vast, and you can get any quality of medical care that you can imagine from the worst to the absolute best. The reason people don’t demand the absolute best for their child is often because they don’t know any better, and they’re scared.”
I was SO scared. I should have gone right for the best. I’m a peds nurse. I should have known better.
I didn’t. For a moment, I became just another mom who was blinded by the white coat.
I had a group of very supportive moms, ones who have been down this road with their own children from China, cheering me on, telling me ‘you need to wait for a second, third and fourth opinion’. I’m so glad I did. Had I not, I would have allowed a surgeon I didn’t feel comfortable with to open the chest of my daughter to do a procedure that no one else thought was good enough. Had I not had a Cardiologist in my corner who worked just as hard as I did to bang down the doors of Boston and CHOP, things might have been so different. Had I not had a pediatrician who told us ‘please, just wait’, I wouldn’t have looked for other options. Had I not called in every favor that I have in the medical world, well, I shudder to think of it.
I worry about the moms and dads that don’t have that.
Dolly’s medical care shouldn’t be worse than anyone else’s because she is older, and adopted. It shouldn’t be better because she has me for a mama. Every child with CHD deserves what she has.
So, my advice, ask for that second, third and fourth opinion. If you’ve got time, use it. Don’t let anyone pressure you. Get on FB, read blogs, connect with other Heart Mamas. It might just mean the difference between a real possibility of death and a 95% chance of life.
who wants life for every heart baby.