Remind me to never ever say to anyone ever again, “At least it could be worse.” It’s the thing we say to each other when we hear terrible news and don’t know how to respond. We think we sound sympathetic and supportive. We don’t. We sound like we are diminishing each other’s hardships and invalidating each other’s feelings. I keep catching myself preemptively saying it to people because I don’t want them to say it to me. And I need to stop doing that too. I need to stop diminishing my feelings about this. The truth is, yes, it could be so much worse, but it doesn’t change the fact that I am scared for my baby.
About a month ago, right before I launched Geekasaurus, Wayne and I took Alice to the cardiologist because the pediatrician had heard a heart murmur several times. “It’s probably nothing, but we’ll get it checked just to be safe,” he said. Statistically speaking, he was right. And even if it was a murmur, statistically speaking, a lot of people have heart murmurs and they do just fine. We had nothing to worry about.
We showed up for our 10:00 AM appointment and figured we’d be in and out. The cardiologist would do his thing, we’d go get lunch, stop at the comic shop on the way home, and get on with our day. It’d be an hour, tops, we thought. We didn’t expect Alice’s doctor to tell us after 10 seconds of listening that Alice had a hole in her heart. He scheduled us for an echocardiogram that afternoon to get a look at what we were dealing with and then we went out to lunch.
Alice charmed everyone in the restaurant while Wayne and I tried to not jump to conclusions. I held back tears. I’m sure Wayne did too. It was hard to not focus on what we had just heard. My brain just kept running those words over and over again in my head. Alice has a hole in her heart. I’ll never forget it.
When we went back to the cardiologist, we went in for the echo. Alice hated every second of it. She cried big fat tears as they tried to get a clear picture of her heart. What 6-month-old can sit still for 45 minutes anyway? She hated being on her back and she hated the gel on the wand. She also hates lotion. I just don’t think she likes being sticky. So much screaming and so many tears. It was heartbreaking, but it had to be done. We needed to see what was wrong.
Afterwards, we waited some more. There was an emergency situation that the doctor had to attend to, which was fine. We weren’t going anywhere until we knew more and our daughter wasn’t in crisis, so we didn’t have a problem waiting. The nurses kept coming to check on us. They offered us drinks and snacks and kept us up to date on what was going on.
Eventually, the crisis was over and we were able to talk to the doctor again. By that time it was around 5:00 PM. We had spent our entire day at the hospital and weren’t even done yet. There was Doctor Who swag in his office, so that helped us feel a little better. The doctor explained that they had enough of a picture to see that Alice has a large hole in her heart, which means surgery, probably open heart. It’s called an Atrial Septal Defect and is the second most common heart defect. Basically, oxygen flows from the lungs and into the heart. It gets pumped through the chambers and the oxygenated blood goes out to the body, except some of this oxygenated blood is sneaking through the hole, going back to the lungs (where it just hangs out for a hot second) before returning to the heart again, completely missing circulation. It means that her heart is working 1.5 times harder than normal. This would cause issues when she got older but she’s fine for right now. Alice isn’t in crisis. She can do everything normally. We watched a video about what to expect, the doctor explained what Alice would look like after surgery and what all the machines are for. He told us the names of the doctors and surgeons at Children’s that we would be dealing with. It took about an hour. We wanted to know everything and our cardiologist was very informative and patient with us.
For days I walked around in shock, waiting to collapse. I didn’t. Maybe I will later. We still don’t have a surgery date. We went to Boston last Wednesday to get a sedated echocardiogram. The surgeons now know exactly what type of surgery is needed. We just need to schedule a date once we talk to our cardiologist about options and what he recommends. I think it will feel more real as we get closer to the surgery. Statistically speaking, everything was going to be fine. If it weren’t for the heart murmur, we wouldn’t even know about this. There aren’t other symptoms to help diagnose a hole in the heart like this one. She would have gone her whole life not knowing until the long-term damage had already been done, and that damage is a lot harder to fix. And from what I’ve been reading, if we didn’t know about it, she would face the strong possibility of an early death.
For now, we wait. For now, I just hug my little Dinosaur a bit tighter than before. Statistically speaking, everything will be fine, but I’ve already been let down by statistics. It’s harder to listen to the logic on that one. So I’ll let my emotions lead the way for a little while as I process all this big news, and I’ll remind myself that it’s normal to be afraid for my daughter. It’s okay to feel upset by this. It doesn’t matter that it could be worse. My daughter has a hole in her heart and that scares me.