Bussy Go!!: Her heart, My love

10 days old, before the appointment

When Madison West was 10 days old, during a routine pediatric appointment, she was diagnosed with a heart murmur. I was shocked, confused, and very very worried. This original pediatrician, whom we never visited again, shuffled us out of the room, talking about cardiologists, a profession that sounded horrible to me at that moment, telling us to "keep an eye on her breathing and color," and assuring us it would all be fine while providing us no real information at all. This was a Tuesday.

After spending most of 40 weeks maintaining a low level, generalized worry about "the baby," I had enjoyed an amazing, blissed-out, 10 days of pure joyfulness. What followed this diagnosis was a devastating 3 days of panic and sorrow. During this time, my friend Stephanie came to visit with her new baby and I lost it into an hour of tears. On Wednesday evening, we were doing as told, monitoring the baby's breathing and color, which landed us at the Children's Hospital Urgent Care Clinic because we didn't know what a baby was supposed to look like and all newborns breathe weirdly! It was there at 11 days old we subjected her to an x-ray at midnight.

On Thursday we had our first appointment with the cardiologist, and Madison underwent an echocardiogram, an EKG, a blood oxygenation test, and a blood pressure measurement. I was especially sad seeing our little baby hooked up to all the wires of the EKG machine. I remember half wanting to take a picture, but also knowing I would never want to see that again, so I didn't. Dr. Weldin, a heart specialist who is about our age and with children of his own, spent HOURS with us that day, carefully explaining the heart, the ventricles, the atria, the valves, drawing us pictures, and showing us a three-dimensional heart display.

One of Dr. Weldin's drawings

Madison was diagnosed with a Ventricular Septal Defect or VSD. This is a hole between the left and right ventricles allowing blood that has already been oxygenated by the lungs and is supposed to be sent back out into the body to instead re-circulate back into the lungs. It can lead to fluid in the lungs, enlarged chambers in the heart, and can exhaust the baby so much that she can't grow. If this happens, the hole must be surgically closed. Dr. Weldin told us to come back in one week. He also recommended us a new pediatrician.

On Friday, we visited Dr. Jackson, who turned out to be a magical pediatrician. (He is actually the Virginia Mason poster boy, visible in the big banner here.) He assured us he had many patients with VSDs, knew what to look for in these early months of growth especially, and would take the time to answer our questions. He told us Madison looked great for now. As we walked around outside after this appointment, I relaxed for the first time in 72 hours. I took a full breath and felt we were on a better path.

We saw Dr. Weldin weekly for 3 weeks and during this time I hit the books. Never previously interested in medicine, I found myself pouring over technical articles like this one. I now know more about the biology of the human heart than I ever wanted to know! I discovered a VSD is more likely to close on its own when it is small and down low in the muscular section. Madison's was moderate in size and up high, in the peri-membraneous region. Dr. Weldin said we had to wait and see if it would behave more like a small VSD or like a large VSD as to how likely surgery would be versus spontaneous closure.

It may not surprise many of you, but Karl and I are different. We both crave information, data, explanations, and understanding. But where he won't worry until he's told it's time to worry, I will worry nonstop until the risk has passed. (Which is a good way to set yourself up for a lifetime of worry, because life is full of risks.) What this meant for us is that Karl wouldn't worry about surgery until we were told she needed it, while I had to get comfortable with a possible surgery, and fast.

The surgery is tough, for those of us who can't imagine people actually do this kind of thing. For a cardiac pediatric surgeon, however, it is quite routine. It involves cutting the chest open, employing a heart-lung machine to keep the blood flowing through the body, and stitching a few tiny tiny stitches into a tiny tiny baby heart before putting her all back together again. Humpty dumpty came to mind; it sounded insane to me. But, I continued my research. This kind of surgery is done on 20,000 infants annually in the U.S., with 250 done yearly at our Seattle Children's Hospital. One for every day of the workweek! It truly is a low risk, routine surgery for the people who do it, and provides excellent outcomes. I got to where I could trust, for these surgeons, it was doable, if not altogether easy, and I began to accept either possibility: surgery or spontaneous closure.

It was hard to tell anyone though. I didn't tell my mother directly, but had a friend do it. I couldn't bear to hear Karl's parents' response either. The first few friends I told reacted with shock and fear and that worst of reactions: pity. Or at least that's what compassion can feel like in this society.

I have spent some time, in the intervening months, dwelling on the need for perfection in our culture, the expectation that anything less is sorrow-causing. And I was trapped by this. I couldn't tell people widely. I couldn't hear their responses, "Oh, I'm so sorry." NO! I didn't want to be in the position of having to reassure people she would be fine, that she was already fine. I was having a hard enough time convincing myself! And so many of you, my wonderful friends, are hearing about all of this for the first time this week.

Our visits to Dr. Weldin continued to spread out because Madison was growing and thriving, such that immediate surgery was not needed. We had the luxury of being able to wait and see if the hole could close on its own. At 4 months we repeated the echo, and the hole was significantly smaller than it had been, and Dr. Weldin didn't need to see us again until she was a year old. Many of you have asked me why we went on our Great Russia Adventure and this is one important reason - because the doctor told us we could. And I am not one to wait on living life.

I had at least two crucial conversations during all this. In the first, my good friend Richelle very matter-of-factly, but with a kind of compassion that felt good, concluded: "well it sounds serious, but fixable." This was just what I needed at that moment, not to be dismissed, but not to fall into a deep fear-fest either. In the second, my fear-fest revealed itself completely as I told my friend Jen after the 4 month echo, "Madison will live to Christmas." And her shocked response, "Oh my gosh Abigail, I didn't know you thought this way!" Yes, I have been known to be more than a little worst-case-scenario in my thoughts and attitudes.

Thus was I presented with the opportunity to work. I didn't want to miss her newbornhood by being sad and afraid. I wanted to be joyful and at peace. For her, for me, and for Karl. So I practiced it. The waiting was hard. My cousin has a baby with something similar that did need surgery when he was 8 weeks old. And 2 weeks later he was pronounced fully cured. I felt a little envious at the early conclusion they were given so much so that I frequently had to remind myself: avoiding surgery was the goal, and being able to wait was a gift.

Now, we have just had her one year echo and the hole is so tiny it is as good as closed. VSDs are measured, not by an image of the hole because they can't do this, but by the amount and velocity of blood passing through it. Madison's hole is so tiny now they can't even measure the blood passing through it. The murmur is gone. She can do anything she wants, including row on an Olympic team (but don't tell her I said that, expectations are dreadful things). I only want her to be free and able to pursue anything she wants. The tiny amount of blood passing the wrong way out of the ventricle won't slow down the efficiency or strength of her heart, not one bit. If she wants to be a fighter pilot or an astronaut, it will need to be all the way closed and she can do this too. (Though most of us are probably disqualified from these two particular professions for a whole host of reasons anyways!)

Fighter pilot in training

I no longer dread the word "cardiologist," and, in fact, cannot say enough wonderful things about Dr. Weldin in particular and this profession in general. They treat and save babies, and help parents through difficult, worrisome times with information and kindness.

And as Karl aptly put it as we were walking to the car, "now we can worry about everything else parents worry about!" Not me, I'm back to my blissed out mommy love. I'll worry when they tell me it's time to worry, that's my goal anyway!