Rube Goldberg Medicine


“Here in America we are descended in blood and in spirit from revolutionists and rebels – men and women who dare to dissent from accepted doctrine.”
— Dwight D. Eisenhower

I am breaking out the old Pregnant and Crazy category a lot sooner than I expected to tell you I never cease to be surprised at how chaotic our modern health care system can be when it should be so simple. Why have we turned a simple switch into a Rube Goldberg device? Follow along with me on my recent journey through the machine.

As soon as I got the little plus sign on the pee stick, I called my regular OB. I went in for blood work and an ultrasound. I frankly expected a plan to be forthcoming on how we would manage the known risks for this pregnancy. At my post-partum visit, I had been told that no pregnancy going forward would be considered normal for me.

My last pregnancy, as a woman with Sjogren’s Syndrome, only had a 1% chance of producing a child with heart block. And because it did, this pregnancy has a 20% chance of that outcome. While we know that the sky isn’t falling and there is an 80% chance everything will be just fine we thought we should be, shall we say, on this. But apparently, my regular OB did not share that sentiment.

What I got, after a week of waiting and two follow up phone calls to her office was sure enough you are pregnant and everything looks fine. Doesn’t look like you have any problems yet. We will maybe check you again at 12 weeks if you are still preganant. But we aren’t going to refer you to the high risk OB until we know there is a problem. Their concern and empathy just oozed.

To get a new pregnancy appointment with the high risk group that handled the last pregnancy so well, I needed a referral. I couldn’t get past the front desk on my own.

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My response: Seriously? We are going to wait around till something goes wrong then hop back on the crazy train? I don’t like this plan. There are studies. There are protocols. Go read about them and call me back. Or refer me. You have two days. You are going to have to do better than this.

Terry’s response, so succinct and to the point as always: Oh hell no!

A few days latter, my regular OB called me back and said she thought I should start on Prednisone. I knew from the months we have spent pouring over all information available about congenital complete heart block that this treatment recommendation was at best a grasp at a straw based on old, unreliable data. It isn’t a recommended or effective treatment in our situation for numerous reasons. I will spare you the details. But what prednisone does do is increase the chance of cleft pallet.

Um. Yeah. No.

Not to be cocky, but at this point it became pretty clear that my husband and I were more educated on this specific subject than my regular OB was or intended to be. We put our heads together and took matters into our own hands.

The first thing we did was email the NeoNatal Lupus registry of which the whole family are already participating members. They are THE experts on this subject and had consulted closely with our doctor’s on the last go round. I asked what their recommended protocol was for second pregnancies of mothers with a previous child with heart block. Less than thirty minutes later the doctor in charge of the registry, Dr. Buyan herself, was on the phone with me. You can check out a video of her on the NeoNatal Lupus Page on this site. She had great information about current research, recommended protocols, and a study currently under way. She offered to speak to any doctors that I needed her to speak with to proceed with the recommended protocol.

What she recommended was a slightly higher dosage of a drug my rhuemtologist and I had already discussed using to manage and slow the progression of my Sjogren’s Syndrome symptoms. It is safe to use during pregnancy and thousands of pregnant women with lupus are on it all the time. The hitch: it seems to be most effective if started by week 10. And we were already burning our way into week 8.

Not wanting to waste any time, I called my rhuematologist. I had been refereed to her by my high risk OB and she was very aware of everything that went on during my last pregnancy. I believe them to be friends personally. I explained the situation and asked if she would be comfortable going ahead and starting me on the drug since we had already discussed it at length. She was but wanted me to clear it with the OB first. Well the OB was out of town on vacation. Fantastic.

So I waited. But I didn’t wait long. My rhuematologist called back and told me to call my high risk OB and get an appointment. She had essentially refereed me by consult. I had not asked her to do that. Talk about coming through in a pinch.

In the words of our current president, “Let me be clear”, but I really will be: II had to get a referral to my high risk OB from my rheumatologist. My rheumatologist! Ludicrous speed captain!

When I called my high risk OB, they had already consulted with NYU. They were on board with the recommended protocol and they wanted close early monitoring of the pregnancy. They were willing to serve as a site for the research study if I wanted to participate. And they wanted me to get in there yesterday.

So, I am now back with the group that so carefully walked us through the last pregnancy. (Where I should have been all along.) We have a plan. We are following the protocol outlined by NYU. And at the moment I am enrolled in the study. We are doing everything we reasonably can using the best science available to us to hopefully prevent any sort of heart block from happening. And we skated in under that 10 week mark with days to spare.

Sometimes a little civil dissent is very much appropriate. Just keeping pushing.

The whole process was like a Rube Goldberg machine. It was much harder than it needed to be. I mean really, we seriously could have done without the drama. Extreme morning sickness and fatigue are enough to deal with thanks. But I think we got to the best place we can be at the moment – 17 vials of blood (so far) and 4 ultrasounds in.

And here is hoping that being here gets us where we want to be without further incident or complication about seven months from now. I would love to have nothing better to whine about than not being able to see my feet, leg cramps, strange cravings (corned beef and pancakes at the moment), and people touching my belly uninvited. After the craziness last time…it would be a treat.

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