Mrs. Wilkerson Goes to Washington

Oh boy. This is going to be a long one for sure. Since I have two types of readers – those that want to know every detail, and those who just prefer the 50,000 foot level – I have done this as a choose-your-own-adventure style of post. Immediately below is the high level version of my story. (Or, at least, as much as I can make it that way.) Lower down, I have my notes from the meetings I have been in. Enjoy, and thanks for the support!

Back when Noah had died, there was an evening of us all sitting around the dinner table, Chris and I and our family and close friends, just before the funeral. It was a time of life when I fluctuated from being numb to being so overcome with grief I could hardly breathe. I knew at the time that stepping up and doing something to prevent others from going through the excruciating pain that I felt at having lost my son was going to be part of my journey. We talked a lot about it that night. My aunt is a legislator in the state of Missouri, and my dad was a political science major in college, and has since always had a healthy respect and sense of ease in our governmental processes, and our rights as Americans to step up and say something if need be. I couldn’t figure out how we would get there. I just knew that if it was meant to be (and I felt that it was) that somehow this would all come together.

Through a crazy set of circumstances, the way to do it appeared in my life, and last May, we were able to change the way newborn screening is handled in the state of Colorado. I got to fully enjoy that victory for a day or two before I had a really tough grief week, ruminating on the fact that I can work hard to save every other baby in my state, but not my own son, and how completely unfair that was. Also, that we had won the battle, but what of the war? Things are good in both of my home states: Missouri and Colorado. But what about the others? Can I rest knowing that children are at risk there too? That another new family may experience the gut wrenching moment of their new baby being healthy and normal to not in a split second? I don’t wish my experience on anybody, so it was time to think bigger.

I started off by reaching out to all the contacts that I had made through our journey to change the Colorado state policies. Does anyone have any contacts? Can I get on the national news to share my story? Who do I need to speak to in Washington? How do I get that valuable appointment to do it? How would we do this trip? I haven’t ever left Aaron overnight since he was born. How would I handle that? Or would we just all go, plus a grandma to help?

An option that presented itself was the Save Babies Through Screening Foundation. A mom in Denver saw our story unfold when we pursued legislation at the state level that was highly active in this group. She contacted me, and we have since gotten to be Facebook friends. She put me in touch with the leadership of this group, and it has been interesting to learn from them.

I saw them post on their Facebook page about attending an upcoming meeting called the Secretary’s Advisory Committee on Heritable Diseases in Newborns and Children through the Health Department in Washington DC. I couldn’t breathe when I saw it. (Who says Facebook is a complete waste of time?!) Basically, the Secretary of Health and Human Services in Washington DC has an advisory committee of doctors and geneticists from the CDC, the American Academy of Pediatrics, from all the leading genetics organizations and labs across the country. They meet to discuss the latest issues in the field, and then make recommendations to the Secretary of the Health Department. The Secretary then chooses which things to make an official policy. Finally! HERE is where I need to be! It was too late for me to register and go at that specific meeting, but I saw that they meet once a quarter or so, so I knew September would likely be when the next one would be.

I contacted the Save Babies Through Screening group and told them that I would like to speak to this committee, and to ask how I would go about getting on the agenda. They said that this was the perfect environment to take my concern, and that they allow comments from the public. Furthermore, they would pay for my travel to get me there!

The trip came together quickly, just two weeks before the actual meeting, once we were sure I could register and get on the agenda. I started to organize my comments and practice them. Everyone said that they usually give three minutes, so that was what I prepared. I did some shopping to make sure that I looked really professional and put together as well. I also did some research into the committee members too. It seemed to me like a large committee would break up into sub-committees that would address the various issues brought before the group. Looking at their website, I saw that they have a laboratory standards and procedures sub-committee, which seemed like a perfect fit for what I was fighting for – a more aggressive turnaround time on newborn screening tests. I found lists of the sub-committee members and googled them to find pictures and any kind of biographical information that would be relevant so I would easily recognize these people and know how I should address them when I met them face to face. The Save Babies group also put me in touch with another mom that was going, and a genetic counselor that advocates for the group as well as having a more active role with this committee. I also put together a handout with my story and my contact information that I could give out to help them remember me when I talked to them. I started to feel nervous, but ready.

There was some stress over speech length. In the past, they have given people 5 minutes to talk. More recent meetings, they backed it off to 3 minutes each. I panned my comments based off of that time estimate. The week before the meeting, I got an email saying that I would have a minute. WHAT?!?! I talked to the Save Babies group that was sending me, who promptly went in and negotiated it up to two minutes. She stressed that the chairman of the committee is a real stickler about that, and if I went over, he WOULD cut me off and be a jerk about it. Crap. After cutting things back, I still was at 2 minutes, 20 seconds. There was literally nothing left I could cut out. So…read fast?!

Finally, it was time to jump on a plane and go. I got to Washington DC with no problems. I got checked into my hotel and had a nice dinner, and ran through my speech one last time. I skyped with by boys, and then tried to sleep, despite how anxious I was for what was to come the next day.

They usually do the meeting at a hotel in the DC area, but this time, they did it at the Health Department, right next to the Capital building. How surreal to be at the mother ship, and right down in the main legislative action in DC! Security was pretty tight, with going through a metal detector, and then having to be escorted anywhere I went in the building. No internet for laptops either. No one was allowed on their network. Still, it was cool to see it.

Right away, my research into the committee members paid off, and I could begin to easily identify key people. I was one of the first ones up on the agenda, so I waited to start talking to people until I delivered my speech. I met with the Save Babies genetic counselor right off, and she immediately emphasized the speech length issue, and reiterated that they WILL cut me off, so watch my time. Shoot. Must look again to see if I can take anything out. The meeting started, and the first presenter was late, so they decided to go ahead with public comments, and emphasized again that you only have two minutes. There was no time for me to cut anything out! I got up there, and prayed, prayed, prayed they would be nice to me. Fortunately, they were, and I did get through my whole speech. I asked the lady sitting next to me to record it, and for your viewing pleasure, here’s my speech (note how FAST I am talking!!)

In case you have any problems with the video, you can read my speech here.

I had practiced and practiced this speech so many times so that I could look the committee members in the eyes as I did it. I also held up a big picture of Noah for them to see. It really did go well, and I got a lot of comments on it from people at the breaks. Whew! I breathed a huge sigh of relief afterwards and steeled myself for what was next…hunting down all those doctors I found in my research on the committee to talk to them one-on-one about what I wanted to do, and to ask for their help. I also kept an ear open through all their presentations on their current projects to see how my issue might be worked in, and then went and talked to the contacts in charge of those projects at the breaks. I felt like I was never “off” because I just had to use every precious minute I was there to try to push my issues forward.

At the end of both days, I was just POOPED and so overwhelmed with information. I don’t believe that these guys will do one big blanket fix like I was able to see in Colorado, but I do have some very good ideas on how I can move things forward in several small ways. I met some amazing people as well, and I hope I get to talk to them more in the future. There was tremendous value in being there and understanding how these guys operate, and making them as a whole aware that this issue of turning around test results is real, and lives are lost as a result. I was sitting there on the second day reminiscing about the days when I was having my first baby, my Noah, and could be blissfully ignorant to that innocent heel prick they did that was his newborn screening test. Most people don’t even know it was run on their babies. It is just such a simple little test. Who knew there was SO MUCH that goes along with it and behind it? Huge debates. Long discussions. Ethical battles. Consistency issues across all the states. Budget and time concerns. It is a huge deal. Lives are saved and lost by that simple test. Lives like Noah’s, and so many other precious babies that I have come to know over the last three years. My head is full, as is my heart as I begin to plan out how to do what I can to move this needle forward.

At the end of the meetings, I jumped in a cab and headed straight to the Lincoln Memorial. Silly fact about me: I find Abraham Lincoln to be a pretty fascinating guy. This is ever since I was a kid studying American history in school, so going to this national landmark was a must do even for the 20 minutes of free time I had while I was in DC. It was fun to see it again, and to enjoy the view up the national mall. Wandering around in the gallery there, I found myself reading the Gettysburg Address that is engraved in there. President Lincoln was no stranger to loss. I think only one of his children made it to adulthood, and his wife literally went crazy with the grief of it. He also lost his parents at a young age (or was it just his mother?) In the moment of that speech he was addressing the war-torn country that had sustained terrible losses, and his words really moved me. He talked about how those lives were lost so that others might live, and challenging those left to keep fighting so that their lives would not have been lost in vain. At the end of the exhausting past few days, I found myself crying in that gallery reading that speech. It was the icing on the cake for this incredible trip to make myself be heard. Put science aside, and think about what it is like to be the parent of these sick children, and please, please, please give them the chance they deserve. This is only the beginning. I will keep fighting.