Crusading at the Capital

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I am overwhelmed. I never would have ever pictured myself being someone who could make broad sweeping change that would affect others, but being a mother has put me in some situations that I never could have anticipated so far, especially given the unique circumstances of my family. I want to remember how we did this, so back to the blog it is. Writing here has always been both a good archive, and place to work out my thoughts.

Noah was born on June 26, 2009. Being my first child, I was ignorant to the various procedures and whirlwind of activity associated with being at the hospital just after having had a baby. Nurses and doctors stop by at all hours to poke and prod both mom and baby. Somewhere in there blood was taken from Noah via a heel prick; the blood smeared on a card. I vaguely understood why. I didn’t pay much attention. It was just something they do to everyone.

After the customary couple of days, Noah was considered healthy and ready to go home. He was a bit of a sluggish eater, but not so much that anyone thought we needed to stay at the hospital any longer. We were encouraged to go home and begin life as a family. Two days later, Noah unexpectedly stopped breathing, and we rushed him to the hospital. Doctors and nurses worked on him for hours to no avail. He died just before midnight. The word “devastated” doesn’t even begin to cover how we felt. This little boy that we were madly in love with was gone in the blink of an eye.

We spent the rest of that night agonizing over what had happened. There was no answer. Chris and I went over and over it rethinking everything that had happened the last few days that Noah had been there, and feeling guilty over any small thing that we could grasp onto. We used our best instincts to care for Noah, and our best instincts had failed us.

The next day, the answer came. First, his pediatrician called with results from his newborn screening. Remember that blood sample they took at the hospital? Well, it turns out our son had a rare genetic disorder called MCADD. What on earth is that?! A quick google search turned up a bunch of medical jargon that our grief-riddled brains could not make sense of. Fortunately, a genetic counselor from the Children’s Hospital in Denver called later that day with the answers we so desperately needed. She had gotten our information from the Colorado State Health Department who ran Noah’s newborn screening test. The health department has an arrangement with the Children’s Hospital to notify them whenever a genetic disorder turns up in their testing samples so they can follow up.

MCADD stands for medium chain acyl-CoA dehydrogenase deficiency (I still have to google it to get the full name right). MCADD patients cannot process certain fats. When the human body runs out of calories, it turns to its fat stores to burn for energy to survive. People with an MCADD deficiency can’t process those sorts of fats. Therefore, if their metabolisms run on empty, there is no backup source of nutrition and their body systems shut down rapidly, and death is imminent. Noah was a terrible eater, and a baby’s metabolism runs so fast anyways that he had a metabolic crash, and died from it. It is a 1 in 15,000 chance that someone is born with this issue. Both parents must be either a carrier of it, or have the full blown illness themselves. Chris and I have since found out that we are both carriers. We had no idea.

MCADD is 90% treatable. The main thing is to NEVER let their metabolisms run on empty. The biggest stressful times are when they get sick and lose their appetites. Also, when they are too young to negotiate with them – to say “you have to eat or we are going to the hospital” and for them to understand what that means. If you fail at getting them to eat, then you have to go to the hospital for an IV of glucose to keep the blood sugar up until they can eat again. Either way, my son died of an illness that was 90% treatable, if we could have gotten the diagnosis in time.

MCADD is on the mandatory state newborn screening panel. There are approximately 30 things that they look for in every baby and it is all run at the state lab at the health department up in Denver. At the time that we lost Noah, we learned that the system worked the following way:

• The blood is drawn when a baby hits 24 hours old. This is mandatory. Once the blood is drawn, there is no mandatory time frame that the sample must get to the lab in Denver. Some hospitals are kind enough to use an overnight courier service. Plenty of more rural hospitals will hang onto the samples until they have enough to warrant sending them in a big package via the US Postal Service.
• Once they are at the state lab, they try to turn them around in 72 hours.
• The state lab isn’t open weekends, holidays or nights. Therefore, though they try to turn tests around in 72 hours, depending on which day your child is born, this guideline really doesn’t work.
• If you do some math, Noah was born on a Thursday. They couldn’t draw his blood until he was 24 hours old (this allows his metabolism to begin working on its own fully once he was separated from me). That puts us at Friday. The hospital couriered his blood up to the lab, but they are closed on weekends, so that brings us to Monday when they can finally begin work. According to their own guideline, they get 72 hours from receiving the sample, so in the end we received word on day 5 after he was born. He had a metabolic crash and died on day 4. This is a day too late.
• The piece of equipment that runs the test is called a Tandem Mass Spectrometer. They cost $1 million. Colorado has two of them, and they run the samples for all the babies in the state of Colorado and the state of Wyoming (Wyoming doesn’t have the equipment so they pay to use ours.)

Chris and I knew that at some point we needed to step up and say something. Someone in a position to change the rules needs to hear what happened, especially after talking to my aunt after Noah’s funeral. She is a legislator in the state of Missouri where we are originally from. She went home, horrified over what we had experienced, and asked some hard questions about the newborn screening process in Missouri. It turns out that they make the use of a courier system to get blood samples to the appropriate lab mandatory, as well as the turnaround time for the tests once they arrive at one of the FOUR state labs they have set up. (Remember that Colorado has one state lab that serves two states!) They haven’t lost a baby to this sort of disorder since 2004 because they are aggressive at catching it early. There weren’t enough words in the English language to explain how furious it made me to hear that. Colorado is living in the dark ages, and people like me are paying the price for it.

We were so raw though. Getting through a day was such an effort. Somehow, some way we had to find a way to survive and be happy again. We threw ourselves into grief groups, counseling, online forums, and anything that we could to learn how others that have walked this road ahead of us were doing it. One thing was certain; we really felt strongly that we wanted to try again to have another baby. We loved being parents and going back to life just about us was so sickeningly unfulfilling.

We opted to do in vitro fertilization since they have the technology to examine the embryos before implantation to tell sick ones from healthy ones. Next thing we knew, our younger son Aaron was here, and as scary as it was to be handed a newborn again, life started to move forward in a positive way.

The idea of talking to legislators has been on the edge of our consciousness as something to do, but how? Where do you start? How do you get them to listen? To care? The way to do it literally fell in our laps.

The clinic we used to do IVF decided that they wanted to do some marketing. They hired a PR firm to interview past patients to get successful case studies. We had a great success story of using their genetics team, so they asked us if we would be willing. We loved the clinic we used and eagerly agreed. Their contact at the PR company called me one afternoon, and I told her our whole story. She was very thorough, and I noticed that she asked me a lot of questions that didn’t entirely have to do with IVF, namely, “how did Noah slip through the cracks of the system?” At the end of the interview, she revealed that she moonlights as a reporter and wondered if it would be ok if she circulated our story around the news media in Colorado. I said yes, of course! She wrote up this story to pitch to her contacts, and away she went.

Next thing we know, the NBC affiliate in Denver called and asked if they could film us. They came to the house, and as tough as it was, we walked through the story again. They did this piece on us that aired in November. It caught like wildfire, airing in Denver, Colorado Springs, as well as being picked up by the Denver Post, the Gazette and various local news websites. They focused the story on the fact that it isn’t mandatory to use a courier service to get the blood samples to the lab, or the turnaround time once it gets there. That seemed the easiest place to start, and the easiest part of it to fix.

Before the story aired, I decided to reach out to the March of Dimes. It was my understanding that they do a lot of legislative work on behalf of babies and pregnant women, and I wasn’t sure if this would be something they would appreciate knowing about ahead of time. The lady that runs this chapter of the March of Dimes and I have a friend in common, and she helped us to meet one another. I called her, and she was very eager to hear more about my story and arranged to meet me for coffee with one of their lobbyists from Denver.

I found the meeting to be a bit frustrating! Their lobbyist was concerned that I was “too hot" on the issue. I suppose it is difficult to meet with someone who has lived a tragedy like I have and wonder…when push comes to shove and you put me in front of legislators, have I done enough work on my grief to not be a complete basket case, and blow the opportunity to make some needed changes? I tried my best to assure him that I am very well resourced in that regard, and though we could have pursued this right off the bat after Noah died, we waited two and a half years before going there. It was clear that with the news coverage that was about to erupt, that we had lit a match, and the opportunity to do something was now.

They invited us to a “Town Hall Meeting” that they were holding at the capital, where a large number of legislators who deal with laws and policies pertaining to protecting babies and pregnant mothers would all be in one place for a brief stint of time. I got the list of who would be attending and asked which ones we should try to talk to. In true stalker fashion, I googled their pictures and Chris and I memorized faces, names and titles ahead of time so we would waste no time in trying to get to the right people.

When we got there, the format was not what we had expected. Legislators swung by for their appointed time. They would go to the front of the room and talk for a few minutes about what they did. They would take a few questions from the audience, and then they would leave. Chris and I split up. I sat in the front row and asked questions at the formal part of the meeting. Chris went into the hallway with a stack of DVD’s of our news story, as well as printed copies, and tackled them on the way out to tell them our unique situation. The news story had aired by that point and some of them had seen it. All were for the most part very receptive.

The main person we needed to talk to was the head of the health department, given that that’s where the newborn screening happens. To be honest he was probably the least friendly of the bunch! Everyone was pretty eager in their presentations to the group to let us all know how busy they are, how many stories they hear from their constituents, and most of all how they have no money to spare in their budgets. He was very much along those same lines. It seemed like he mostly just wanted to say whatever he needed to say to brush us off. He did hear us out at least. We gave it our best shot. We went out for a nice lunch afterwards and patted ourselves on the back for truly doing the very best we could.

We went back home and time passed. The ongoing needs to keep things going were to be like Chinese water torture on the poor lobbyist from the March of Dimes we had gotten to know, calling and emailing letting him know that we are still here, we haven’t forgotten, and how are things coming?

We were left out of the loop to the particulars of the discussions that ensued up at the capital. I would have been fine to be more included, but also respected their process as well. I felt like I had been thoroughly heard out, and that there was nothing left to do but to fix it. Each time I checked in, I offered to come back up to Denver to speak to whomever, but he assured me that it was well in hand.

Finally, the letter came from the head of the health department indicating the change in policy! Funny how I was sure he wasn’t receptive, yet he was the one who pushed it through! The vote was unanimous amongst the committee involved with very little discussion, which is amazing. Everyone understood how important this was. It was the easiest way to do it as a policy change on their end rather than to make it a law. What the health department says is followed exclusively by the hospitals. To make it a law would mean countless hearings and signatures and hoops to jump through. The whole process to get this changed took six months, which still just amazes me! I thought it would take a few years! That was what I had heard about such things. So here’s what’s been changed:

• Hospitals are no longer allowed to use the US Postal Service to mail samples. They must be couriered up to the state lab.
• Once at the state lab, they will turn around results in 48 hours.
• Since Noah passed away, they have revised the lab hours. The lab is open 6 days a week regardless of holidays
• I have been assured that the two Tandem Mass Spectrometers we have churn through the blood samples for Colorado and Wyoming babies with no problem. And, because there are two of them, if one breaks down, they have the other for backup.

This is such an improvement! I just get sick in my stomach to think about what we would have done for Noah if we had gotten his test result in time. We would have bent over backwards to take care of him. Whatever the experts told us to do, we would have done it. We didn’t get that chance. But now someone else will. They will get to hold their baby and watch them grow the way that we didn’t get to with Noah. It is its own variety of hell to outlive your children. I am overwhelmed thinking about how we have prevented some families out there from knowing what this is like. This feels so right, and I am so glad we put ourselves out there, reliving the worst moment of our lives for the sake of saving someone else from having to do it.

The one thing that remains in my head is: why does this differ so greatly from state to state? It feels like it is the luck of the draw what state your baby is born in, along with genetic odds that you may or may not be aware of that will determine the fate of your family. Genetics you can’t help, but what your state provides to protect you? That shouldn’t be an issue. Missouri hasn’t lost a baby since 2004 to this sort of issue. Ours has only just recently gotten with the program. Noah was the cost, along with who knows how many other babies? God, I wish I could sit down with the president for just 10 minutes to share my story. I think it needs to be a blanket standard across the country and the states that lag behind will have to get with the program – perhaps lean on better resourced states to comply. Think of how Wyoming leans on us in Colorado. I don’t know who I need to talk to, but I just pray that the opportunity presents itself. I have the story. I just need the ears to hear it.