Our baby boy has had some issues to work through in his first few weeks of life. First, he was a bit jaundice. We had a jaundice child 10 yrs ago and the primary treatment was placing her under a special UV light to allow her to absorb the rays and eliminate the elevated bilirubin count in her blood. This time, the docs had us wrap him in a special fiber-optic blanket that has a neon-looking green glow to it. He could not take it off except for diaper changes and the like. It is plugged into a special light production box that resembles a computer, so he was not very mobile. It was expected that he would only be on this blanket for 24 hours, but it turned out he was in it for nearly an entire week. It appears the jaundice is mostly behind us.
The more significant issue he’s dealing with was suspected to be a rare form of a metabolic deficiency commonly called “3-MCC” (3-methylcrotonyl CoA carboxylase). This basically means that he is missing an enzyme that does not break down leucine (found in foods with protein). This enzyme essentially filters out harmful substances from the bloodstream. The potential effects on the child is that he may not process proteins correctly, thus not get specific types of energy that his body needs to thrive. 3MCC children are known to get very sick from simple, regular sicknesses like a cold or fever. It is likely that we will have to learn a whole new world of dietary needs. These were some of the many concerns floating around our heads as we tried to figure out what is going on with this deficiency.
HOWEVER, after a bit of research and getting more and more worried about the situation, our time to meet with a metabolic specialist came on October 12th…and we were basically told not to worry about it. Apparently most 3MCC children never have any significant symptoms and that we will simply need to monitor the carnitine levels in his blood. That’s a key indicator, which even if it does get low (not likely), it is easily treatable. So, it’s a big ... wheeew, that’s a relief! We were very happy to discover it may not be a big deal at all. If it does happen, we’ll be prepared. But it is great to know we’ll probably have a happy, healthy little guy. Sometimes these newborn screenings can uncover issues which can make parents worry more than necessary. I am glad we were able to gain some perspective by meeting with a specialist. Because the online reading I did about it made it sound like a “big” deal. Rare, yes. “Big deal”, probably not. But I am glad we’re aware of it and know it’s there in case it becomes an issue.
I’m driving with our kids after sundown one day last week when a thoughtful question comes from the back seat. “Dad, are we upside down?” said Moriah. I respond: “Not that I know of. The car is driving on the road like normal. What do you mean, sweetie?” She takes a moment to put her thoughts into words, then says, “Well, during the day time, we are closer to the sun and on the top of the world. But when it gets dark, that means we are on the other side of the world and we are upside-down, right?” My first reaction was to explain gravity, etc. But then I got to thinking about it, and maybe she’s right. Hhhmm. One of those imponderables.
