The Myelin Sheath

At 8:30pm on November 17th, 2009, Arlo was supposed to let out a giant wail, announcing to the world that he’d arrived. Instead, he sputtered and struggled to take even the shallowest of breaths. He was pale; a shade somewhere between the silver examination table where he’d been placed and the cream colored knit hat they’d put on his head. They fussed over him, listened to his heart and lungs, and spoke in jargon to each other. One of them finally addressed us, but “Shmeeech nulah isparenlinish …. oxygen… helgabylan…brain….grblgrblgrbl…observation” was all I heard. I felt like I was regaining consciousness after fainting from a nitrous balloon; people’s faces were distorted and somewhere in the distance I could hear what I thought was the second track from “Axis Bold as Love” by the The Jimi Hendrix Experience. What kept me rooted in reality was the firmness of Lindsay’s grip on my hand.

In the neonatal intensive care unit, Arlo slept in his plastic pod. Lindsay was permitted to remove him to nurse, but while in his incubator, we could only touch him by reaching through a portal attached to a built-in glove, like we were handling a level 4 biohazard or repairing a solar panel on the space station.

He looked perfectly normal to us, but his breathing was erratic and his heart rate low and arhythmic. Each time it skipped a beat or his respirations dipped below 60 per minute, an alarm sounded and a nurse sauntered over to check the screen and make notes. I remember taking my own pulse while listening to his on the monitor, hoping it would be faster than mine, but it never was.

It was a few hours before a resident spoke with us in any detail. They’d done an MRI on his brain and found “some spots possibly indicative of oxygen deprivation.” “What does that mean?” I asked. “Well, it’s difficult to tell how something like this might develop, but he might have motor problems that cause twitches and other involuntary movements.” she responded. I realized she was telling us that our infant son was possibly brain damaged. Lindsay and I just stared at her for a moment until finally she asked, “Do you have any other questions?” Yes, about a million, but I don’t really want to know the answers to any of them, I thought. “So that’s it?” I asked. “Well, we’ll have the chief of neurology look at the MRIs to confirm it. She should be in later today. You can speak with her too if you want.”

They allowed us to remain in the hospital that night where we curled up in a single bed, neither of us knowing what to say. I think we were both coming to terms in our own way with what the future might hold, and honestly, it didn’t take long at all for us to accept it. In fact, I think we were both surprised that our default state was acceptance. We were sad and nervous, but steadfastly committed to tackling the situation, whatever it may be.

The next day, the neurologist delivered the same news. Though his heart rate and respirations were now within the normal range, his MRI showed what looked like the effects of oxygen deprivation. She did mention, however, that the abnormal spots on the brainscan were oddly symmetrical, and as a result, wanted to confer further with the rest of her staff. In the meantime, though, we were free to take him home.

The morning after spending our first night at home with Arlo, I received the following email:

Subject: MRI Results

I think I have good news for you. I reviewed the films with our other neuroradiologist and he thought that the signal in the basal ganglia was most likely due to myelination of that area – more prominent than usual, i.e. advanced for age – but most likely a normal variant. Myelination means that the nerve tracts get covered with insulating sheathes, similar to the wiring in your house. That process is incomplete at birth and continues up to 19 years of age, but particularly in the first year of life. You can see it on the MRI.  He agreed that the signal was far too symmetrical to be due to lack of oxygen. We looked at a number of pictures from Atlases on neonates with lack of oxygen and became convinced that this is highly unlikely in this case. I hope you find this reassuring.

Best,(name omitted)
Chief, Division of Pediatric Neurology

Obviously, we were elated that what was originally seen as damage actually was just evidence that Arlo had a spectacularly advanced brain. At the same time, though, we all felt just a little odd celebrating, because honestly, even “bad” news would have been ok. But I’m still keeping this email for when he wins a Nobel Prize. His heart rate has remained on the low side, but I think that just means he might also win the Tour De France.

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