Monday, February 23, 2009

Regrets and what-ifs

I know it's pointless. I know it will make me insane. I know it will never get my daughter back. But I can't help the thoughts, the doubts, the regrets, the what-ifs.

The day before Samantha's original open heart surgery in June of '08, she kind of had a “goopy” eye. We didn't think much of it since none of her siblings showed any signs of pink eye. I told the surgeon about it at her pre-op appointment and he said we would probably just go forward with the surgery as scheduled. And the truth is we were relieved. Really. We had spent so much time waiting, worrying, and lining up all the arrangements to make this happen, that we just wanted to go through with the damn surgery!

Well, as it turns out, her slightly goopy eye was a sign of an infection that goes by the name H-Flu (non-typal). Somehow, the infection in her eye made it into her bloodstream and caused a pretty frightening infection in her chest cavity after her surgery. So, I can't help but think, what if her original surgery had been pushed off because of her eye infection. She wouldn't have gotten the horrible infection in her chest. Nobody can say exactly what caused her cardiomyopathy, but it certainly could have been the original surgery or the subsequent infection. Maybe, if we had waited until her eye was clear, she wouldn't have ended up with severe cardiomyopathy 7 months later

Or how about this? What if I'd taken her in for an echo cardiogram before December 9th? She was scheduled to have hers done in January. One month too late. What if we'd just put all the clues together - the decreased appetite, the slow weight gain, the slightly delayed gross motor skills. What if I'd taken her to the cardiologist with that list of symptoms and said I thought something was wrong? Where were my motherly instincts? Maybe, just maybe, they would have discovered her enlarged heart before it was too late. We'd still have a big problem, of course. Her heart was on a collision course with disaster any way you look at it. But still, if we'd just avoided cardiac arrest, we would have avoided brain damage (not to mention an image seared in my mind of doctors performing cpr on my baby girl). No brain damage would have meant we'd be talking about a heart transplant, rather than withdrawing life support.

What if someone had discovered her enlarged heart while we were at the hospital, but before the arrest? Which is funny, because someone kind of did. When I took her in to the ER on December 9th, they did a chest x-ray and the ER doctor immediately came in, looking a bit alarmed, and asked me if she normally has a large heart. My answer, was a resounding “no, she does not.” So he flees the room “to call her cardiologist.” An hour later he comes in and tells me that he looked at prior x-rays of her heart from 6 months ago and that she DOES have a large heart. He actually said “that's something you should know.” Now, I did question him at this point because I am the kind of mom who would know that if it were the case. But after questioning him again, he insisted that no, her heart is normally large. Nothing to worry about here. Sidebar: we later found out he was looking at an x-ray from right after her original surgery when it was a bit swollen from the operation. Fucking idiot.

Amazingly, and this really speaks to my ridiculously naive optimism, I believed him and completely forgot about the whole incident. I really did believe him when he said her heart is fine and that her problem was just bronchiolitis. It literally wasn't until I saw the line on the screen go flat and heard the doctors say “start chest compressions” that I remembered the whole enlarged heart discussion from the day before. It all came flooding back, of course, just too late. Oh how I wish I'd just mentioned it to even one doctor once we got to Fairfax on the 9th. Maybe we could have averted tragedy.

Like I said at the start of this post, intellectually, I know it's pointless to even go down this road of what-ifs. Intellectually I know I did the best I could. I am a good mom and I loved Samantha unconditionally. Still, I can't help but think there were at least a few ways to avoid losing her. We just missed them. Every single one of them.


  1. It's so easy to play that game, and so dangerous. I think it's tantalizing to think there's an alternate universe out there where maybe our babies don't necessary live, but we feel better than we do because of some different choices. It's so hard to feel guilt on top of grief. The best intellect in the world has a hard time separating the two out from one another. I'm so sorry.

  2. I know that nothing I type could possibly help, but I found you through LFCA and wanted to let you know I'm thinking about you and your family. I actually grew up in Northern Virginia and wanted to ask you some questions... if you get a chance, would you email me (see profile)? Thanks and know that I appreciate your new blog and your girl will never be forgotten!

  3. Here through LFCA . . . so, so sorry for your loss.

  4. i can relate to this so much. to you. 3/4 mom, i guess, is what i am as well.

    this post, though...god. i KNOW my daughter would be alive today if i'd have (insert a lot of shit here). there were just so many things, and i can't help but think i should have known better. and really, i DO KNOW BETTER. it's just such a fog when it's happening...anxiety, depression, confusion.

    my ob/gyn told me two days ago after my annual exam (as we were talking about what happened to me) that he looks back at his past, at his decisions, and just thinks he did the best with what he had at the time. i thought, sure, you're a man. at that moment i was struck by how much i just could NEVER feel that was about the decisions i made when i was pregnant. NEVER EVER. the information in my brain at that time was just too frothed in with all the emotional shit. i will never look back and think i did the best i could, although other people could objectively say it and much of what they say makes sense.

    but it's not really about making sense, now is it. it's about how we're mothers and our kids are dead. bottom line. and now, here we are.