Statistics & Reactions

As I mentioned previously, statistics have become a big part of what we're wading through amongst all the information we can get our hands on. Here are some of the biggies...approximately 85% of all babies that have HLHS surive the first surgical procedure, by surgery 2 that creeps up in the low 90's and by round 3 we're talking around 98% survival rate. That is all well and good and believe me, of course I get that medical technology is ever evolving and 20 years ago all but a few of these babies died within their first week of life.

Our odds are probably a little better than 85% survival on the first surgery for the simple fact that we are aware of Olivia's condition before she's born. See the thing about HLHS is that it can be easy to miss and there can be absolutely nothing wrong with these babies in their first few days of lives. Some of these poor parents happily took their babies home only to find that a couple of days later they were either having a cardiac episode or even worse had passed away in their sleep as their ductus (fetal heart valves that close within the first 10 days of life) closed as they are supposed to do.

In utero, Olivia is like any normal healthy baby, she's getting all her food and oxygen from me and growing as she should be. It's only after delivery when those ductus start to close that she will or would have issues. The idea is that shortly after delivery she will be given an IV of prostaglandin (medicine to keep her heart ductus open) to prolong her fetal circulatory state until surgery and then surgery will stabilize her blood flow until she's a little bigger to take on some more serious re-plumbing.

I understand, we are blessed. Blessed to know what we are up against, and blessed to have the time, opportunity and resources to put together a game plan before she ever makes her debut. Perhaps even more blessed to have all of our immediate family intact, ready and willing to help and most importantly LOCAL. Maybe it was fortuitous that we got all this news in the week of Thanksgiving.

Aside from all of those blessings and thanks I did have quite the interesting week observing our families reactions. Some thought we would call off Thanksgiving because of all the news, some assumed that it was a hush hush topic and others didn't talk about it at all even if I broached the subject. I felt like a jerk with the super optimistic people who felt like it could be just all a misunderstanding, a mistake perhaps that would clearly sort itself out once she was born. I would smile and nod but cautiously explain that I had seen the ultrasounds for myself, seen her little heart pump all over except in that lower left corner that just sat still. But still they hold out hope that maybe a miracle will happen. I am certainly not saying that we are too good for a miracle, by all means I hold out the slightest hope that this is somehow wrong and this happened because it was to serve as a lesson to us as parents of how precious Olivia would be to us, regardless of her still inside me or not. I just cannot 100% put all my faith and trust in that miracle because it would be a crushing blow to think that for the next few months and then still have to say "see you later" if and when the first surgery rolls around.

Friends were next, once the holiday weekend was over we started telling our closest friends. If I thought family was interesting, friends were moreso. You had the few that openly admitted they had absolutely nothing to say (props to them), some that looked like they may throw up at the thought of what I was saying, others offered to fly out at a moment's notice if we needed them and lastly the group that tried to buoy our spirits by focusing on the odd's. "85% is really good, I'm sure she'll be fine". I know 85% is good, there were many a test that I was stoked with an 85%; but I couldn't help thinking and even pointing out what their reactions would have been if that 85% was their child's life in the balance. Would that be enough? What is enough when you're talking about the odds and the life of a loved one?