Tuesday, March 31, 2009

Lack of Apology

Do medical schools teach Doctors that apologizing is a sign of weakness? Is it too much to ask such a highly educated person to display a bit of remorse? Are they somehow above this type of behavior? From our experience with Evan I would have to say the answer to this question is yes.

I apologize in my job all the time. If a client is upset, I’m quick to apologize. It’s a simple act. It doesn’t fix or change anything. However, it does make a difference. The kicker here is, my job never involves whether someone lives or dies. NEVER. The issues at hand are much less significant.

Erin and I have yet to receive a single apology from any Doctor we visited. If they would have told us there was a CHANCE Evan’s condition could be non-lethal I would be much less surprised by a lack of apology. This simple acknowledgement would have changed the way we did EVERYTHING. We would not have induced. We would have had a sliver of hope. We may have even appreciated and enjoyed Erin’s pregnancy a little bit. However, we were told with 100% certainty that Evan’s condition was lethal. We had no hope. We had no joy. We did not embrace the pregnancy at all. It was something we had to avoid talking with about strangers in the grocery store. When they would get a big smile on their face and ask the due date, the sex, Erin would quickly answer with one word and move on. When we were leaving one of our many Doctors appointments prior to Evan’s birth we happened to get on an elevator with a young couple taking home their first child. They had the camcorder going and everything. If we had some hope I could have looked at that situation with SOME positivity. However, while we were in that confined space there was awkward tension as we did not look at the child or the parents. We did not say one word. I had to fight back the urge to turn to them and say “I’d be happy for you but my child is going to suffocate to death in my arms minutes after birth”. I wanted to grab the camcorder and smash it into pieces right in front of them. What a horrible reaction to what is probably the happiest day of these peoples life. This is what a diagnosis like the one we received does to you. It kills you. It changes you. I places hatred in your heart. Maybe other people handle things differently. They find strength in their religion perhaps. However, I’m willing to bet, if they are being honest with themselves, they feel exactly the same way I did. It’s just not very socially acceptable to admit it. After what we went through, I could give a damn about what’s socially acceptable. An apology would be very acceptable.

I’m certain that the Doctors are elated that they were wrong….and that Evan is doing well. I know they are happy to hear it and they wish all of their cases would end like this. However, this case almost did not end like this. We induced early with the plan to provide only ‘comfort care’ to Evan while he passed. He was not going to be whisked off to the NICU if he was struggling. We expected him to struggle…..a lot. If he would have had a curable problem he probably still would have passed. We ALMOST induced him 2 months early. However, Evan was breach. When I reflect on the way everything played out I feel like I had been rolling around in a minefield with a blindfold on. When we realized Evan would make it I feel like I was standing on the other side of the minefield and someone just had removed my blindfold. It’s an indescribable feeling.

I’m sure if I tried to pin the Doctors down to liability the blame game would be in full force. I vaguely breached the subject shortly after Evan’s birth and the nurse for our perinatologist/OB mentioned that they did not make the diagnosis, it was Dr. X, the specialist we were working with, that gave us the diagnosis. While this may be true we still saw our perinatologist every week and he agreed we should induce. He was even willing to induce 2 months early, even though Evan was breach. I’d say that’s quite some confidence in the lethal diagnosis. I don’t care who originally gave it. If he had doubts I don’t think he would have been so willing to induce….no matter what. If we tried to pin down our specialist she would mention that she is a research Doctor and was just giving us her opinion. However, we all know the truth. She is the most experienced and EVERYONE was looking to her for the answers and what to do next. I tried to get second opinions. The organizations I reached out to immediately referred me to this same specialist we were already working with. After those efforts I found no reason to question her “opinion”. If we just exercise some common sense it’s easy to see that the responsibility falls squarely on her shoulders. What should we have done differently? Ignore the leading specialist in the field and make our own decisions…based on, our denial? Please. It doesn’t matter that we can’t prove liability in a court of law. We all know the way this played out. A simple statement that she was not SURE it was lethal would have been great. She may have never stated in writing that she was 100% sure Evan’s condition was lethal. However, agreeing that inducing 2 months early (or even earlier), even if Evan was breach, solidly affirms her certainty in her diagnosis. Would you ever forcefully induce a healthy child 2 months early?

After all this. I fail to see how hard it would be to simply apologize to us. We deserve it.



  1. Eric...please don't take this the wrong way. I mean what I am about to say to be conveyed to you in the upmost respect. It sounds like everything is beginning to set in and you're digesting everything that you've gone thru. But, what good does it do to dwell on the what if's? Evan is here now and is doing well! Yeah, you lost out on enjoying the pregnancy and you couldn't embrace it. That is heartwrenching and a complete drag. But, look at the prize you now have!!! The joy from the first time I read your post on POLP when Evan was born and the blog has started to fade.

    I know after my Ellie was born, I went thru a whole facade of emotions. See, I was told that I was having a huge baby...you know what Ellie's length was? 17inches (and 7#). Hardly a "huge" baby, huh. I had NO idea during the pregnancy that Ellie was an LP but was told bluntly 2 hrs after her birth (before I even got to SEE her or hold her) that she probably had a form of dwarfism and we (her dad and I) needed to get genetic counseling ASAP. I know this is nothing in comparison to the gamet of feelings you experienced (and still are) but the point is, doctors don't know everything. Even the 'best of the best' make mistakes. I'm not trying to stand up for the MD you are talking about. I'm just wanting you to see that doctors DO make mistakes...BUT, very rarely will you get the "I'm sorry" from him/her. I seriously doubt you'll get this from your doc. I'd love to have that apology, too....just to acknowledge that what I was told I was going to get, I didn't! But, it'll never happen. I'm not going to dwell on it. I did at first... the whole idea comsumed me (along with all the crazy post-preggo hormones). But, I finally got it thru my thick skull that I was going to miss out on some really awesome milestones if I didn't get outta that funk. I still have days that take me back "there" and I become a bit bitter, but they are far and few between.

    Hang in there, Eric! Enjoy the most precious gift that has been given.



  2. In most states it is not legal to induce a child early if they might survive- so I think you are correct to assume that their willingness to induce indicates that they were 100% positive. I agree that they shouldn't have been, and they should apologize. They probably won't because of lawsuits or whatever.
    I totally know what you mean about the elevator...

  3. I've stumbled upon your blog because my husband and I found out on March 13th, 2009 that the little girl I'm carrying has a lethal form of skeletal dysplasia just like you guys were told.

    The problem is the day before we were told she was just going to be a LP. In less than 12 hours we were told she would live minutes.

    We are getting a second opinion at Johns Hopkins. You can follow my blog here:


    If you would like. Right now we just don't feel comfortable with the diagnosis because although they feel comfortable telling us with 100% certainty that she will die in minutes they aren't able to answer many of our other questions as to why, etc.

    So, I'm hoping and praying our story ends up like yours.

  4. Eric,

    I do agree that you deserve an apology for what you were put thru. I know what it's like to not be able to enjoy the pregnancy because all you can think about is losing your child at the end. I went thru that. Yeah you have Evan here and now but you also missed out on the joys of the pregnancy and his birth. Instead of being happy and couldn't wait for Evan to be here you dreaded it because you thought you were saying hello and goodbye.Some people just don't like to admit they were wrong.

    Good luck you guys!!