What Changed?

I’ve gotten so many wonderful emails of praise about Dolly’s heart.  Thank you so much!  We are still trying to process the change that happened when we went to the larger children’s hospital.  It was kind of like finding out that the spot on your xray that you thought was cancer wasn’t.  It’s not that Dolly has a clean bill of health, or that this surgery isn’t risky, it is, but the odds are much more in our favor.

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.

3 thoughts on “What Changed?

  1. I’m so glad that you posted this, and that you listened with an open heart when we all encouraged you to wait. I’ve seen several kids suffer the consequences when surgeons attempted procedures they really had no experience with, or when procedures were performed when there were better options to be had. But I have to add that in our own personal experience with one of our sons, it wasn’t the more experienced (and world renowned) surgeon who brought a better option to the table, but rather the little guy. The big wig recommended what he had personal experience with, and did not even mention the newer procedure which took our son from a palliative repair to a full one. When we brought it up, he admitted that it would be the better option for our child but that he didn’t bring it to the table since he himself had never performed it. The little guy didn’t have any experience with the newer procedure either, but at least he brought it to our attention and then he brought in a big wig to do it. My point is, it’s another reason that getting multiple opinions is so important: you never know who will have the plan that could ultimately change everything for your child.

  2. I think sometimes you have to not be afraid to go with your gut too. My instincts told me there might be a better answer for our baby of I waited, but I was so scared that I might offend someone. I needed to not worry about that. This isn’t a popularity contest after all.

  3. I love this post, and I agree wholeheartedly with following your gut and seeking multiple opinions, Becky. I am so glad you did. When our son, Daniel, came home, I knew nothing of Yahoo groups and Facebook groups for support. I knew absolutely nothing medically. Nada. We simply trusted God to guide us. And our son went to Heaven. I can’t look back now, because I have have complete faith in God’s plan for ALL of us. I could go crazy if I explored the “what if’s” so I choose not to. Instead, God called me to write my book, With an Open Heart, and I need to continue to share it as our testimony of God’s goodness. Not the path we wanted…but the path we were given. All glory to God:)Here you are, one month after this post, and you are going home with Tess today. She is a miracle baby and we are so grateful for God’s mercy to heal her and keep her in your family. May God bless your beautiful family always:)

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