Saturday, May 31, 2014

Washington DC - What it's really like doing this...

Home sweet home! I just got back from Washington DC, where I continued to push for clearer policies and care with the turnaround time of newborn screening test results. Before life gets back into it’s usual pattern, or have people building me up with “atta girl!” sort of stuff that can make me forget, I want to take a moment and process what this is really like. It is hard. I am emotionally drained. Someday, when I am done doing this work (will that day come? Who knows!) I want to remember the good the bad and the ugly. Or not sure if that is even the right way to describe it. Let me just see how this goes.

It is hard to do this – speak in front of these people. It’s crazy that I feel this way. I off-and-on in my professional life have to prepare presentations and give them. I don’t get nervous about it. It’s just part of what I do. I have also been asked to speak about Noah here and there over the years. He is one of my favorite topics of conversation, so I don’t mind, and again, don’t get that nervous. I just kind of do it. But man, I don’t know what it is, but with this group, I get old fashioned stage fright all the way. I really tried to pay attention to it this time and examine why I feel this way. Here’s what I think is going on.

I am scared of what I don’t know. I have studied up on this stuff a lot since Noah died. I have studied all about his illness, about the newborn screening system at large that identifies MCADD, the process involved, and how it all works. I know more than the average parent about this stuff by far. As hard as I have researched it, I will never be a molecular geneticist or biochemist. That’s who sits on this committee. They are the best and brightest in this field, and have been doing it for years. That is intimidating to go up against!

I am scared about my unintended short-sightedness. Is what I am asking for reasonable and appropriate? Will I fix my problem, but cause a half a dozen others that might put other families at risk? Am I just being stupid here?? I try to go in and listen hard and take to heart what any naysayer has the courage to tell me either directly or indirectly. How does it run up against what I know to be true? Do I need to adjust my argument or proposed solution? Do they even want my input? Or not? How do I fit in here? I try to be thoughtfully aggressive on my issue. Nothing will happen if I am not Chinese water torture on these guys. I just want the policies to be smart and well thought out, and pray, pray, pray that my limited knowledge is enough.

It makes for a nervous situation, constantly re-evaluating how I fit in with this crowd. The Save Babies ladies are amazing at reminding me again and again that parents simply have to be part of the discussions that this group have. Decisions cannot be made in a vacuum by a bunch of scientists sitting around a board room table. Talking about it all in a very cerebral fashion like that, and actually living and breathing what is decided upon are two very different things, and as a parent, I am uniquely qualified to offer that perspective. At a logical level that makes absolute sense. At a heart level, I still doubt I have it in me to be that person, that parent. And yet, here I am doing it for better or for worse. I know that what happened to my son was wrong. He should still be here, living, breathing, growing. I have to hold on to that and keep pushing forward.

So here’s how I thought that it went:

I look on the agenda, and I know that my spot is coming soon. I had carefully written a speech and practiced it many times so that it felt comfortable rolling off my tongue. But yet, it is almost my turn, and my heart starts beating like I have run a marathon. I have to focus on slowing down my breathing. There is no lectern to hide behind. It will just be me in this crowded room with a microphone. I try to take in my surroundings ahead of time to navigate how I will get up there without tripping. There are briefcases and cords that have been successfully and unsuccessfully duct taped to the floor. Jesus, how am I not going to trip?? Once the lady before me finishes, I try to gracefully get up and make my way to the front. I hold the microphone and my speech. So crap…both hands are each coordinating something. That’s not the best, but whatever. My knees are shaking. I am wearing a knee length skirt. Can they see my knees shaking? I start to read, and realize that to my ears, there’s kind of an echo between what I hear in my own voice, and what is coming out of the speakers from me speaking into the microphone. It must be a function of where I am standing in the room in relation to where the speakers are. The last lady sounded fine and not echo-y, so it must just be my experience. I have already started, and I have to keep plowing forward through my speech. I just have to try to stop focusing on what I am hearing, and focus instead on just getting through my speech. I hope I practiced this thing enough that I am getting the right inflection in my sentences the way I wanted. I hope it isn’t so freaking obvious how nervous I am. I finish. The chairperson asks me a question or two; simple ones thankfully. Nice to meet you, and will you be coming to the subcommittee meeting later to hear more of the discussion on this topic. I thank him and reply that yes, I will be there. I hand off the microphone to the next person. I am now free to go sit down. I am shaky legged, but make it to my row before I trip a little on someone’s stupid briefcase. Really lady?! Thanks for leaving your crap in the middle of the row. The people sitting next to me are comforting me and saying I did great. Take a deep breath. Lord, I feel like I screwed that up. Sorry Noah. I feel terrible I couldn’t do better for him. Damn.

Here’s how I think it actually went:

At the breaks the rest of the day, as well as the next day, there is no shortage of people hunting me down to introduce themselves and ask further questions. I feel like they are doing it because they feel sorry for me. I keep blaming it on the morning sickness in a desperate act of self-preservation. But then, a couple of people unsolicited, tell me that I am an eloquent speaker and ask me what my day job is and if I do lots of public speaking. Really?! Surprised at that. Really surprised. I am hopeful that I actually did pretty well, and all that stuff was just in my head. I am sure some could see right through me, and knew how scared poopless I was. Though, for most, everyone was very kind and eager to learn more. At the end of the day, does it matter? The goal is to move the needle forward, and if I have swayed a bunch of folks to help me for whatever reason, then who cares, right? So, I think I actually did much better than I thought.

By the end of day two, I felt like I had accomplished a lot. As you can see, I was pretty emotionally drained, and eager to be by myself to process. My hotel wasn’t the one right next door where everyone was staying. It was one metro stop away, and I am so glad. No bumping into people in the lobby. I can isolate and get myself together.

This was kind of a unique visit. I was expressly asked to come this time to share my thoughts on how I think they are doing. By in large, I tried to just say “thank you” over and over. Thank you for having me. Thank you for your hard work. Thank you for working to address the issue. I did have some tough stuff to say, and I did, in fact, say it.

  1. They are working to develop best-practice guidelines for the timing of how and when the newborn screening process happens. I am all for cleaning up this stuff, but the problem is that lots of groups have best practice guidelines that address timeliness. They all fall flat when it comes to enforcing them. It is no good to just post their document on a website and adopt the usual “if you build it, they will come” philosophy. I told them that that is only getting the job half done, and they need to think about how to keep it front and center in hospitals and lab’s minds.
  2. They had mentioned at the previous meeting the idea of approaching what’s called the “Joint Commission” to see about putting best practice guidelines in their stuff. The Joint Commission is the large accrediting body that oversees all hospitals in the United States. If they set forth a guideline on something, it is followed to a “T” by hospitals. If they fail to do that, then they lose their accreditation. It takes an act of God to get a guideline put in their book, but this committee at the health department is the group to do it. I asked for an update on this. Also, this step only addresses half the issue. State labs mess up too, and were the main culprit in our story, since they were closed on the weekend when we needed them most. I asked what comparable activity they were doing to make hard guidelines for labs, and not just focus on hospital policies.
Regardless of what they do on points one and two above, I think I have a good solution, and tried to talk to as many of the committee members about it as possible. The Milwaukee Journal Sentinel built this amazing database of hospitals across the country, that tells everyone’s turnaround times on newborn screening tests for 2012.  If one of the organizations on the committee took this project over (I recommended the Centers for Disease Control, and everyone agreed that they would probably be the best ones to do it), and make the database open to the public, it accomplishes two goals:
  1. I am a pregnant mom with a child at high risk of having MCADD. I would love to use a database like this to shop programs in my area to see who is going to be the most aggressive at catching the illness. I should have access to something like that.
  2. On the flip side, it provides a pretty clear roadmap to who needs further training to improve turnaround times.
It should be expanded to cover not just hospital data, but state lab data as well. Transparency – these guys knowing that they have to share this data publicly on a regular basis – would hopefully naturally cause them all to be more clued in on how they are doing.

Big fingers crossed that the committee gets it and pushes this idea forward. We will see. All I can do is put it out there to the right folks and see what happens.

The next meeting is in September. I will be too pregnant to travel by that point, so I will see if I can do it through the webcast option. It certainly isn’t as powerful as actually being on site, but it’s the best I can do.

This is such a wild and crazy experience filled with lots of emotions, but man, I just have to get over myself and do this for my boy. Again, I found myself at the Lincoln Memorial before heading to the airport. I stood there in the crowded gallery, and cried my eyes out while reading the Gettysburg Address just like the last time I was in Washington DC, advocating for Noah. All that stuff in there about how people died so that others could live, and how those of us left behind have to take up the charge and keep pushing the mission forward so that the loss of life wasn’t for nothing…it always gets me. What a powerful grief statement, and so validating after a couple of days like this. That is 100% why I put myself and my family through this. To protect my soon-to-be new baby and know that the system responsible for maybe saving her life will be there doing what they are supposed to when I need them most. And, to give other families the options that I didn’t have. They will never know that I have done this for them, but I don’t care. These kids deserve to have a fair shot at life with all the tools and information that they life-or-death need to have about their health. Thinking about those things makes this so very worth it. Not done yet.


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