Tuesday, May 15

Hope and Denial

I had received an email about the conference the week prior and had briefly considered attending.  It was not really in my field, but I am now interested in neonatology much more than I had in the past so it caught my eye.  The day prior to the conference, I had decided definitely not to go and reasoned that I had really been silly to consider it.   Truth be told, the real reason I had considered going was that upon looking over the schedule of events, one in particular had caught my eye.  The ethics panel toward the end of the day.  My doctor was one of the presenters. 

I wondered if I was the case that she would be presenting.  Then I shook myself and thought how conceited I was to even consider that as a possibility. 

While I was driving to work on the day of the conference, I became overcome by the intense feeling that I HAD to go to the conference.  It is strange the feeling that came over me, but all of a sudden I changed my mind and decided to go.  I got to work and mentioned to my assistant that since I didn't have any patients that day, I had decided to go to this conference and how crazy I was to think that I would be one of the cases presented at the panel.

I drove to the medical school where the conference was being held and finally found where I needed to go.  I was late so there was no line when I checked in.  The woman at the registration table checked me in and gave me a folder with the schedule and some other information.  I opened the folder and started looking over the papers inside. 

There was a sheet of case vignettes for the ethics panel.

Mine was the last one.

What I felt next was similar to the symptoms of a panic attack since it involved my stomach knotting up, my chest tightening and feeling as if I could not breathe.  I quickly scanned over the words, silently willing them to not be what I was reading.  I went outside to catch my breath.

My first phone call was to Ken but he did not answer. I then texted one of my best friends, who also happens to be an ob/gyn.  She called back right away (luckily) and I told her what was going on.  Several expletives were expressed and she basically said she couldn't believe I was there and was I going to stay.  I told her I didn't know.  It was a small conference with maybe 100 attendees so when my former doctor went up for the panel, she was sure to see me in the audience.  After that, one of two things would happen.   Either she would skip the case or ask me to leave.  No way would she present the case, especially since it was obvious by the way it was written that she had completely disagreed with what Ken and I had chosen to do. 

I had always felt that she was a bit cold and almost changed to a different doctor but then shrugged it off and stayed.  Now I wished I had changed doctors as she obviously had complete distaste for us and our choices.  She had subtlely misrepresented some things about what happened in the vignette and I was loath to consider in what light she would present me.  Now it was just a matter of did I have the stomach to listen to people talk about me, Ken and our precious baby Rachel?   And did I really want to listen?

In the end, my friend suggested I lay low and stay near the back which is what I ended up doing.  I can't tell you how slowly the next few hours dragged on as I waited for the ethics panel.  Somehow I managed to avoid seeing her and settled down on the floor in the back part of the auditorium.  I figured I had every right to be there.  I was a physician and there was nothing saying it was a closed meeting like morbidity and mortality meetings.  I imagine most patients do not have access to such meetings as I did though but I couldn't help what my profession was.

There was one case before Rachel.  When they started talking about us, the first thing that the "panel" focused on was why we hadn't done comfort care (which we had). They started questioning the steroids I got at 32 weeks so that if Rachel had been born, her lungs would have been more mature.  They criticized why I had "refused augmentation" at 35 weeks when I was 5 cm dilated and why we had demanded an echocardiogram once Rachel was born (what the cardiologist had asked us to do in our last visit with him).  They kept coming back to how much we were in "denial" for wanting all these things.  That even though we were health professionals (also mentioned in the vignette) that we were still acting like parents and were in denial about our daughter.

It took everything I had not to stand up and scream at them.  "We just wanted to give our daughter a chance!"  Why was that so hard to understand?  I think that is what hurt the most.  That just because Rachel had Trisomy 13 and some congenital anomalies, some arguably quite severe, we couldn't just "accept the inevitable" and let her die.  As if the book had already been written about her and I needed to close it and be done with it. 

What I wanted to tell them was that even though I only was able to be with my daughter for a little over 2 days, that I cherish those moments.  That I wouldn't change anything we did and want to punch someone for criticizing me for not accelerating her death.  I am willing to bet none of those "experts" have ever had to go through the unthinkable experience of being told their child will most likely die.  Why is it wrong to want to give your child a fighting chance? 

The other thing that was said that I will never forget was when one physician compared Rachel to the other baby in the case before.  He said that the two babies were completely different and that the other baby had a chance at being a "functional member of society" and that "this baby [Rachel] had a messed up brain and would never be able to be a functional member of society." 

As if he could determine the worth of an individual.  Shame on him for saying that.

I had heard just about enough when a woman physician spoke up and said, "I have to disagree with all of you.  I would have done the same thing as that mother."  I had held it together quite well up until that point but hearing her validate our decisions somehow made me cry.  I don't remember the rest of what she said but the sentiment was that there was nothing wrong in the decisions we had made. 

I left after that and wondered if the conversation had changed anyone's view on the subject or if they would keep thinking the same thing as always.  I know there are so many physicians that believe that Trisomy 13 and 18 babies are not worth keeping-- that they should be terminated (a nice way to say abortion).  Now I will not pretend that everyone will feel the same way and do what we did.  I was terrified and devastated when we were given Rachel's diagnosis but our choices were right for us.  I suspect though that had we not both been physicians, it may have gone a different way.  The topic of whether we were religious people came up at that conference and my former doctor also mentioned that Rachel was our only girl.  As if that explained our course of action because certainly if it had been a boy we would not have been in "denial" and would have terminated like a normal couple.

My friend the ob/gyn said that in training, they are taught to strive to obtain the optimal outcome, meaning a healthy baby.  The focus is on those babies and anything other than that is considered a failure.  I wish that more of them would realize that even though it would be wonderful if there were no neonatal deaths, depriving parents of even a few moments of joy with their baby is wrong.

I will admit that throughout the pregnancy I experienced moments of denial about Rachel's diagnosis.  I continue to experience moments of denial when I can't believe she is really gone, but hope has always lingered there among those feelings.   Hope that she might be born alive.   Hope that we could take her home.  Hope that I might eventually have the clouds part and see the sun again.  Ironic since we live in the "Sun City." Hope that I will someday see her again.

An Italian proverb says "Hope is the last thing ever lost."  I ask you, what parent can ever give up hope for their child?  Even when that hope is that their child dies a peaceful death, hope remains.  That is not denial.

1 comment:

Kate said...

Wow. How strong of you to sit an endure this conversation. I don't know that I could have. I've often wondered if our situation with our baby Lucy was used as an example after we refused an amnio several times. I'm pretty certain I was spoken about like I was living in denial. But, to us it didn't matter what they would label her. She was ours. And Rachel was yours. To not feel the need to allow parents to do what they need to do as parents seems a crime. I'm so sorry to hear about your precious baby girl. I know you miss her so much and I can feel your love pouring out through your words like only a mother's can. We looked at pictures of our T13 baby Lucy tonight together as a family. She would have been 10 months old tomorrow. There are still tears, and there is still pain. But I think I would have more pain and guilt if I had allowed my baby to be a victim of some doctors "process." They would have assumed I would terminate her precious life, even as she kicked inside my belly, full of life. You will see the sun. Everything from here on out will be seen through new eyes. Keep the hope alive.